ABCD_Book_Pages

Support for all affected by Primary and 

Secondary Breast Cancer 

BREAST CANCER 

SUPPORT 

BREAST CANCER SUPPORT 

1 

ABCD Book V2.indd 1 07/04/2020 19:57

Breast Cancer Screening 

About 1 in 8 women in the UK are diagnosed 

with breast cancer during their lifetime. If it’s 

detected early, treatment is more successful 

and there’s a good chance of recovery. 

Use this guide for an overview of: 

Benefits & Risks | When it’s offered | What happens | Your results | FAQs 

www.nhs.uk/conditions/breast-cancer-screening 

Breast 

Cancer Chat 

Worldwide 

Thanks to social media, patient communities 

are thriving online. People gather to support 

each other, connect with others who understand 

and share information. It was how we, the cofounders 

of @BCCWW, got to know each other. 

Taking inspiration from others who created thriving 

communities, we started a twitter chat, held every 

Tuesday nights 9pm – 10pm GMT. 

Topics can vary, anyone can join in, mainly for 

patients but professionals/clinicians and guest 

tweeters also join and everyone is welcome. 

MEET THE 

FOUNDERS 

Yvonne 

Jo 

Rachel 

@Yvonnenewbold 

@abcdiagnosis 

Julia 

@rachelmanning11 

@Hellboy8700 

Jools 

@AliceWTMatter 

9PM 

UK 

TIME 

EVERY 

TUESDAY 

@BCCWW 

Search the hashtag 

#BCCWW 

Open to anyone 

affected by breast 

cancer, any stage 

or age - everyone 

is welcome! 

2 abcdiagnosis.co.uk Support for all affected by Primary and Secondary Breast Cancer 


CONTENTS 

4 

6 

8 

10 

11 

12 

13 

14 

15 

16 

17 

18 

19 

20 

21 

22 

24 

25 

A warm welcome 

Who are abcd? 

Breast Cancer Self Care 

Christine Venning 

Farida Anderson MBE 

Joanna Bott 

Breast Cancer Nurses 

Lesley Eaton 

Leanne Nash 

Helen Bacon 

The right surgery for you 

Sarah Tebbett 

Codilia Gapare 

Samina Hussain 

Post-op Physio 

Your rights at work 

Medical (drug) therapy 

Beth Roberts 

26 

27 

30 

31 

32 

33 

35 

36 

37 

38 

40 

41 

42 

43 

44 

45 

46 

47 

Julie Wray 

Fiona Morrison 

Radiotherapy treatment 

Sarah Coombes 

Exercise and movement 

Victoria Yates 

Jo Noble 

Emma Robertson 

Shazia Calvert Davies 

Breast Cancer Lymphoedema 

Lesley Stephen 

Basic Discovery BC Research 

Julia Bradford 

Clinical trials 

Fundraising 

METUPUK 

Joanne Myatt 

Julie Osborne 

48 

49 

50 

51 

52 

53 

54 

55 

56 

57 

58 

59 

60 

61 

62 

63 

Fear of cancer returning 

Ductal and lobular BC 

Sara Bonnell 

Roger Newman MBE 

Dr Yoga 

Carolyn Gammon 

Cheryl Gruwys 

Patient research 

Emma Willis 

Living with cancer after 

treatment 

Other services you may 

need to access 

abcd retreat 

Charities for holiday grants 

Natalie Yates-Bolton 

Nicola Cottington 

Support groups 

Thank you to all the patients and professionals whom have contributed to the book. 

Also a huge thanks to friend Emma Robertson who had kindly edited all the stories that 

have appeared in here. Fab support and I couldn’t have met the deadline without her. 

Thanks also to my family as this work has taken me away from normal life and holiday 

time but I hope they can see it was worth it in the end. 

Jo Taylor 

Founder of abcdiagnosis and METUPUK 


3 


Hello and welcome to our information book which has been 

produced to help and support breast cancer patients. 

After Breast Cancer Diagnosis has reached out across the 

world via the website and social media sites. In total we 

engage in excess of 16,000 like minded people. 

The book has been put together by patients who have all 

been where you are now. We hope the content will help you 

and take away some of the fear of the unknown. 

This book has been just over 12 months in the making and I 

am very proud of the results. Feel free to contact me if you 

would like to see anything else in the next version, where we 

will try to include even more of the many stories we received 

from our contributors that we were not able to include in 

this publication at this time. 

We look forward to connecting with you over social 

media and please share this amazing book with others. 

Now starts the real 

challenge of surviving, 

being in remission, or 

Founder of abcdiagnosis and METUPUK 

living with and beyond 

cancer. You will also 

meet many good people 

who are there to help 

gofundme.com/breast-cancer-exercise-retreat and guide you on your 

road to recovery. They 

will find you when you 

jo@abcdiagnosis.co.uk 

are least expecting it!” 

” 

@abcdiagnosis 

Chris Curtis, Chairman of The Swallows 

facebook.com/abcdiagnosis 

Head & Neck Cancer Support Group 


Jo Taylor 

A WAR 

WELCOME 

“ 

“Cancer 

is a long 

and hard 

journey, you 

can’t wait to 

finish and then 

you suddenly feel 

all alone as you 

have been cared for 

through chemo. 


ARM 

E 

ABCD Patient 

Booklet Patron 

I have been a Consultant 

Medical Oncologist at The 

Christie Hospital since 2002 

with a specific interest in breast 

cancer. I have a particular interest 

in treatments for advanced breast 

cancer using novel techniques and 

drugs and combinations of multiple 

treatment modalities for patients with 

complex problems. 

I am happy to support Jo Taylor, who is a 

patient of mine with advanced breast cancer. 

I have witnessed Jo’s untiring drive and 

determination over many years, not only the 

challenge living with ongoing treatment for 

an incurable disease but also campaigning 

relentlessly for breast cancer patients and 

banging the gong for increased access to 

new and better treatments on the NHS. 

Jo also has a very active Twitter account 

(@abcdiagnosis) and runs her website 

(abcdiagnosis.co.uk) and has put together 

a secondary breast cancer infographics to 

help patients recognise symptoms of the 

disease. She also runs the abcdiagnosis 

retreats where patients get together in 

Saddleworth, near Manchester, to share their 

experiences and enjoy the great outdoors 

and support each other and network with 

other patients to help each other to live with 

ongoing treatment. 

Jo has raised over £19,000 for the Christie 

Hospital and has also appeared in breast 

cancer related books, on radio and television 

to highlight issues relating to cancer 

treatments, and other aspects of care with 

regard to supporting and helping patients. 

In my time as a medical oncologist, I have 

rarely seen a patient with this level of drive, 

commitment and energy. She is an inspiration 

to those who know her and work with her on 

each project that she is involved with. 

I am proud to call Jo a friend and she is truly 

an inspiration to me and those of us who 

work in the breast cancer community and to 

all the patients with whom we work and to 

those that strive to challenge the issues that 

this disease brings, as well as patients who 

live with secondary breast cancer. 

I am delighted and honoured to have been 

invited to be Patron of this patient story 

book and proud to be associated with 

abcdiagnosis. 

Greg Wilson 

Consultant Medical Oncologist 

The Christie NHS Trust 


5 


WHO ARE AFTER 

BREAST CANCER 

DIAGNOSIS? 

Abcdiagnosis is an organisation and network 

offering ongoing peer to peer support for 

patients with a breast cancer diagnosis, 

reducing fear, anxiety & isolation, and 

supporting them to resume their normal 

everyday life, both living with & beyond cancer. 

After my own diagnosis with breast cancer in 

2007, I became acutely aware of the lack of 

resources & information available to breast 

cancer patients. One avenue I explored was 

exercise, finding that my own mental health 

& well-being improved substantially when 

exercise became part of my own approach to 

my diagnosis. 

The web site has grown and developed over 

the years and I think it helps that I can relate to 

all aspects of other patient’s journeys, having 

breast cancer myself. 

HOW DID IT ALL START? 

Created in 2013 we are the patient “one 

stop shop” for breast cancer, whether it 

be primary or secondary cancer. 

I launched on 15th February 2013, six years 

into my cancer diagnosis. A year later I 

was rediagnosed with incurable secondary 

breast cancer but continued to develop 

content for the website, engage in patient 

advocacy and set up the exercise retreats 

and patient advocacy. 

This has led to the launch of my other 

website in October 2019 METUPUK, 

which focuses on secondary breast 

cancer. The SBC infographic for red 

flag symptoms is signposted by NHS 

England for use throughout England 

for breast cancer patients awareness of 

signs and symptoms. 



AFTER BREAST CANCER DIAGNOSIS 

Abcd helps with: 

• Awareness of secondary breast 

cancer red flag symptoms 

• Patient advocacy 

• Signposting 

• Campaigning 

• Fundraising 

• Connecting patients 

• Information about research 

and clinical trials 

How can you fundraise 

or support? 

We cannot do this without your help so 

below are some examples of how you can 

help to support us: 

• Follow and like our Facebook and 

Twitter pages 

• Donate to us via go fund me page 

• Create your own event to raise money 

• Share our work 

• Get involved 

Your support means that we can continue 

the important work that we do. 


7 


BREAST CANCER 

SELF CARE 

Whatever your age, size or shape, 

it’s important to be breast aware 

and check your breasts regularly. 

Breast cancer is the most common cancer in the UK, so 

it’s important to look after your breasts by checking them 

regularly. Getting to know how your breasts look and feel 

will help you know what is normal for you. You will then be 

more confident about noticing any unusual changes that 

might be a symptom of breast cancer and reporting them 

to your GP (local doctor). 

HOW DO I CHECK MY BREASTS? 

Everyone’s breasts look and feel different. Some people have 

lumpy breasts, or one breast larger than the other, or breasts 

that are different shapes. When you check your breasts, try to 

be aware of any changes that are different for you. 

Look at and feel your breasts so you 

know what’s normal for you 

Try to get used to looking at and feeling your breasts regularly 

– for instance, when you are in the bath or shower, using body 

lotion or getting dressed. You don’t need to feel your breasts 

in any special way. 

Do this regularly to 

check for changes 

If you check them as part 

of your usual routine you 

won’t need to worry that 

you aren’t doing it often 

enough. Decide what you 

are comfortable with and 

what suits you best. 

Tell your doctor as soon as 

possible if you notice a change 

If you notice a change in your breasts, 

go and see your GP as soon as you 

can. Most breast changes are normal 

breast changes or due to a benign 

(not cancer) breast condition, but it’s 

important to find out what’s causing 

the change. 

Remember 

to check all 

parts of your 

breasts, your 

armpits and up to 

your collarbone. 

Listen to a discussion with one of our nurses about 

normal breast changes and how to check your breasts. 



What are 

normal breast 

changes? 

Your breasts change constantly 

throughout your life from puberty, 

through adolescence, the reproductive 

years and then the menopause (when 

periods stop permanently). 

Changes around the time 

of your period 

Your breasts may feel heavier and fuller before your period. 

They may also be tender or lumpy. After a period, this 

usually lessens or disappears altogether, although some 

women have tender, lumpy breasts all the time. Many 

women also have breast pain around the time of their 

period (cyclical breast pain), which is normal. 

During pregnancy 

Your breasts go through a lot of changes during and 

after pregnancy. Many pregnant women feel a change in 

sensation in their breasts such as tingling and soreness 

(particularly of the nipples). The breast and the areola 

begin to get bigger. The nipple and areola become darker 

and remain that way during pregnancy. 

Before, during 

and after the menopause 

As oestrogen levels fall during and after the menopause, the breasts 

may change size, lose their firmness, feel softer and may droop. 

Changes, such as a lump or tenderness, are also common at this time. 

Lumps often turn out to be breast cysts (fluid-filled sacs). Tenderness 

may be non-cyclical breast pain (pain that is not linked to the 

menstrual cycle), which may need to be treated with pain relief. 

If you have a breast cancer 

or breast health query 

It’s important to see your GP (local doctor) about any 

changes that are new for you, even though for 

most women these will be benign (not cancer). 

TALK TO OUR 

BREAST CANCER NURSES 

0808 800 6000 


9 


How do I 

? 

check my 

breasts 

Check all parts of your 

breasts, your armpits 

and up to your collarbone 

for changes. 

A change in size or shape 

A lump or area that feels 

thicker than the rest of 

the breast 

A change in skin texture 

such as puckering or 

dimpling (like the skin of 

an orange) 

Redness or a rash on the 

skin and/or around the nipple 

Your nipple has become 

pulled in or looks different, 

for example a change in its 

position or shape 

Liquid that comes from the 

nipple without squeezing 

Pain in your breast or your 

armpit that’s there all or 

almost all of the time 

A swelling in your armpit or 

around your collarbone 

Registered charity in England and Wales 1017658 • Registered charity in Scotland SC038104 

Christine Venning 

In 1984 I attended my 

first Family History Breast 

Clinic because my mum 

had recently died of 

breast/bone cancer. She 

was first diagnosed at 

43 and it returned in her 

bones when she was 60. 

My GP was on the ball and 

referred me to Douglas 

Hansell’s very new clinic at Stobhill Hospital. I went 

every six months and came out relieved each time. 

However, the week before my appointment in 2007 

I realised I had a thickening and knew that this was 

my turn. 

Aunts and cousins had all had varying experiences of 

breast cancer. My brother had died of osteo-sarcoma 

in 1999, which had been very unpleasant. He was 

diagnosed late because he was 49. It was my turn now… 

Although I knew what it was, I kept calm through 

everything. It was grade 3 so Mr Hansell wanted to 

operate that week, but I was moving house! I got a 

week’s extension, moved house on the Saturday, and 

presented for mastectomy on the Sunday. 

I had been advised to wait for the result of genetic 

investigation before having the other breast removed. 

All went well and I elected to join the TACT2 trial 

and have chemotherapy 2 weekly. By the end of that 

and the radiotherapy I was exhausted! I was then 

prescribed 5 years of oestrogen suppressant. 

It turned out we do not have BRCA 1 or 2 but the 

opinion is that it is genetic - just not a gene that 

has been investigated yet. I gave up the hormone 

treatment at 7.5 years. I could no longer manage the 

joint and muscle pain and the very low mood. I was 

“signed off” from my hospital care last September. 

I am 72 now and for the first time since 1984 I am 

not attending the breast clinic. I miss my lovely nurse 

specialists. The services have been cut, women being 

diagnosed now don’t get the care that I had. We don’t 

know if it is genetic but the geneticists are pretty sure 

it is. My main concern is what it might mean for my 

family and their children. Now, the new normal... 

whatever that means! 



Farida 

Anderson MBE 

@FACT 

team 

My breast cancer story 

I was diagnosed with Breast Cancer 

in February 2013, aged 52, having 

retired from my job as CEO of a 

Charity and hoping to enjoy life 

after working from the age of 16. 

Learning I had breast cancer was the worst 

thing ever because my own mum had died 

from the disease aged 48. My cancer was 

picked up through a routine mammogram. 

There was no lump but ‘calcification’ was 

growing in my body and would start to form 

a lump over time. It had not spread to my 

lymph nodes but I was Her 2 positive, a very 

aggressive cancer… To beat it, I required 

surgery, chemotherapy, radiotherapy and then 

the magical drug Herceptin. 

I didn’t cry in the consulting room, and I 

couldn’t look at my husband who was sitting 

behind me. I think he was in just as much 

shock. I remember thinking “how am I going 

to tell people without crying?” 

My children were adults, with their own 

families, but still seemed like babies to me. I 

had never been unwell in my whole life. I was 

a strong woman, the founder of a charity and 

the person people came to for help. 

I was really not used to asking for help, so the 

diagnosis created a mixture of emotions. I felt 

weak and ashamed. I did not want sympathy 

and whilst friends and family were amazing, I 

felt unable to share the journey. How can you 

tell those who look to you as Mum, Sister, and 

Daughter that you are scared of dying? 

I can remember the times I was on my knees 

crawling to the bathroom… I talked about 

giving up the treatment because I felt it was 

killing me. The chemotherapy was horrendous 

and I used to say if this is being cured, I think I 

would rather die. 

Five years on, my hair has grown back, I am 

slowly regaining my confidence and the 

personality I was so sure of before cancer is 

returning. During treatment I felt like I had 

lost control and had no ability to solve the 

problems of life. 

The experience lead me to establish a 

community group called FACT, which 

stands for FITNESS AFTER CANCER 

TREATMENTS. 

I was so shocked at how little support there 

was after treatment stopped, when people 

seemed to think you are fully recovered as 

you look so well. Here is some information 

about the group; 

https://www.youtube.com/ 

watch?v=cn3SutfeaLE 

I have also collaborated on a theatre show 

called TITS UP where we present our stories 

to raise awareness and create camaraderie 

to overcome the cancer. We want the 

performances to be an opportunity to free 

women from their painful journeys. People 

are surprised when they see me now and 

comment how lovely my hair is and how well 

I look. If there is one thing this journey taught 

me it is to not judge any book by its cover. 

Even without hair, I was still Farida… 


11 


@catty 

fizzle 

Joanna 

Bott 

Just 3 months after 

my 26th birthday, on 

the 10th February 2011 

I was told I had breast 

cancer. I had been to 

see my GP, who luckily 

took me seriously when 

I said my left breast 

‘didn’t feel the same’. 

Within 2 weeks I saw the Breast Consultant 

and had an ultrasound and a biopsy. Due to 

my age I was told it was likely to be benign. 

I went by myself to get the results, having 

told everyone it was going to be fine. My 

heart sank when they both walked in. I knew it 

didn’t need two people to deliver good news. 

Life had to be put on hold. Buying a house 

and getting engaged were suddenly swapped 

for a mastectomy and waiting for my hair to 

fall out. 

The mastectomy and lymph node clearance 

went well, but later on I developed issues. 

Being an avid rock climber before treatment 

started, I was determined to continue. I 

ignored advice and went off to hang from a 

cliff face in Wales! 

Unfortunately, I went on to develop 

lymphoedema in my left arm. It is well 

managed with compression garments and 

massage. I have also developed regional pain 

over the scar tissue on my chest. Again, this is 

well managed and I continue to swim, climb 

and run. 

I was given the chance to freeze my eggs 

prior to chemotherapy but sadly this didn’t 

work out. Adding chemotherapy, ovarian 

suppression and hormone therapy to the mix 

meant that a later round of IVF also failed, and 

it is extremely unlikely I will ever have children. 

Chemotherapy was a tough ride. As soon as I 

knew I would lose my hair I had it all cut short. 

As soon as it started to fall out I shaved it off. 

Everything was lost except my leg hair. I’m 

convinced that my leg hair and cockroaches 

will survive the end of the world. I became 

quite ill with neutropenia towards the end 

of chemotherapy. I remember lying in the 

isolation unit in hospital thinking I was going 

to die. I ended up with peripheral neuropathy 

in my hands and feet which has left me with 

very little sensation in them. 

Radiotherapy felt fine at first, but I had 

been warned that the effects would be 

accumulative. My skin burnt badly, and I was 

fatigued by the end of those 5 weeks. 

After ‘Active’ treatment ended I took 

Tamoxifen. If anyone was going to develop a 

rare side effect from it then it would be me so 

I now have regular eye checks for Tamoxifen 

related Crystalline Retinopathy. 

Seven years on from diagnosis, I have come 

out of this feeling physically and emotionally 

damaged. Everything you feel is normal and 

perfectly acceptable. 

Don’t be afraid to 

ask for help. 

There are lots of us – you are not alone. Learn 

to laugh. Do your research. Life may never be 

the same after a cancer diagnosis, but it must 

go on. 



Breast Care Nurses are specialist nurses who work solely 

within Breast Cancer. They are experienced nurses who 

have also undergone further specialist education and 

training in caring for patients with breast disease. 

The Breast Care Nurse acts as a key worker throughout a 

patient’s treatment pathway and liaises closely with the multidisciplinary 

team involved with a patient’s care. All breast care 

nurses are expected to: 

• Use their knowledge of cancer and treatment to oversee 

and coordinate services, personalising the cancer pathway 

for individual patients and meeting the complex information 

and support needs of patients and their families 

• Use empathy and advanced communication skills as well 

as their knowledge and experience to assess and alleviate 

the psychosocial suffering of cancer including referring to 

other services as needed 

• Use their insight from patient experience to lead service 

redesign in order to implement improvements and make 

services responsive to patient need 

Specialist nurses involved in primary breast cancer also manage 

family history clinics, the complications of surgery including 

drainage of seromas, prosthesis fitting, identification of 

recurrence and adjustment to survivorship. Many have advanced 

examination skills and manage patients’ breast cancer follow up 

instead of the surgeon. 

In recent years, there has been nationwide acknowledgement 

that while breast care nurses have a consistent set of core skills, 

there is a significant difference between the knowledge and skills 

required to support patients through diagnosis, surgery (including 

reconstruction), chemotherapy/radiotherapy and survivorship in 

early breast cancer, versus those required to support patients 

with metastatic disease where no cure is possible. In addition to 

this, the government ensure hospital trusts are meeting targets 

for the diagnosis and treatment of primary breast cancer, but 

no such targets exist for secondary breast cancer, creating an 

unconscious bias for specialist nurses who are trying their best to 

support a high volume of patients through their cancer journey. 

Breast Cancer Care have worked with patients who have 

Secondary Breast Cancer to provide a list of requirements for 

specialist nurses (or a CNS - Clinical Nurse Specialists) working in 

advanced (secondary/metastatic) disease which include: 

• Specialist knowledge of metastatic (secondary) breast 

cancer and how it can progress over time. 

• Specialist oncology treatment / palliative care knowledge. 

• Understanding of the implications of living with a chronic, 

life limiting illness. 

• Understanding of the psychosocial, spiritual/existential 

impact of metastatic breast cancer on the patient / family. 

• Knowledge of local and national support services for 

metastatic breast cancer patients. 

• Knowledge of current clinical research and trials. 

• Knowledge of end-of-life care guidance. 

• Knowledge of national and local information and support 

for patients’ families. 

• Ability to discuss long-term illness issues, palliative care and 

end-of-life issues. 

• Managing conversations with family members including 

children. 

BREASTCANCER 

NURSES 

“The Christie team became a service 

focussing purely on Secondary Breast 

Cancer in 2016 and have developed 

a structured support pathway for 

patients in their first year after 

diagnosis. The team feel this allows 

for a proactive rather than reactive 

way of working and allows for the 

development of a strong relationship 

between patients and nurses. The 

approach helps the team to provide 

better information for patients, helps 

to act on issues before they reach crisis 

point, and uses the nursing resources 

they have more effectively. 

Medical appointments can focus on 

medical issues, and the CNSs can 

support the medical appointment but 

also focus on supporting patients in 

relation to their psychological and 

social needs. Working closely with 

palliative care, the team feels that 

the approach also facilitates earlier 

advanced care planning for the end of 

life, when it becomes appropriate.” 

BREAST CANCER SUPPORT 13 


Lesley 

Eaton 

LIVING WITH METS 

@Joy_ 

Blog_1975 

I was diagnosed with breast cancer in 2009, just 

3 years after I lost my Mum to the same disease. 

I was 34, I’d been sent for boob cyst draining, 

something that I was used to and not 

overly worried about. During my ultrasound 

the technician asked if I’d ever had a 

mammogram and suggested we pop me 

through for one. 

The mammogram showed a mass under 

my cyst. My Mum’s old Doctor got to tell 

me that, although we needed to wait for 

biopsy results, they were CONCERNED and 

SUSPICIOUS. 

Returning to the hospital after what I’d 

describe as a f**king s**t week, I knew what 

was coming... We were ushered into an office 

to meet an elegant woman with her greying 

hair tied in a messy bun. We did the hand 

shaking, she gave me the stern smile, and 

informed me that as expected I had cancer. 

I was not surprised. Devastated, but not 

surprised. My questions were; 

• Am I going to die? 

• How am I going to tell Dad? 

• Can I drink wine? 

• Can we get kittens? 

I had invasive ductal carcinoma, grade 2b, 

ER/PR positive, HER 2 negative with lymph 

node involvement, still primary, and still 

curable. 

After a year of treatment, I was packed 

off with a box of Tamoxifen tablets. Then, 

following 3 years of scanxiety, I visited my 

oncologist for a routine appointment in 2013 

to be hit with a curve ball. “How about a 

Tamoxifen break to try for a baby?” We told 

the doc we’d think about it but that I needed 

to get a rheumatology appointment out of 

the way first; I had this muscle pain in my 

chest, an RSI probably… 

B*llocks!! My precautionary bone scan 

showed an unexplainable patch on my 

sternum. A bone biopsy explained it - an 

isolated sternal lesion. 

I had 5 months of Paclitaxel chemotherapy, 

a sternum resection and reconstruction 

(ouch!), then Zolodex, Zometa & Letrozole… 

Like, forever this time… 

By 2018, after 5 more years of scanxiety, I’m 

thinking that if my next PET scan shows no 

evidence of disease, miraculously I’ll be in 

remission…!!! 

I’ve had no pain but it’s not good news… 2 

hip mets and a neck one too. Treatment is a 

bit of an adjustment, but do-able. I feel like 

setting up camp in the hospital car park… 

12 weeks later, a scan shows progression in 

one of the mets threatening to de-stabilize 

my right leg. They recommend a full hip 

replacement. Within 2 weeks I am a bionic 

woman, and yes, I will set off airport alarms 

(we all need silver linings). 

Currently, I’m awaiting another scan to assess 

whether my other mets remain stable so that 

I can stay on these very do-able drugs. I have 

everything crossed apart from my legs - not 

quite there after the hip op! 

I have a good life, it’s complicated 

and scary at times but I’m still here, 

still smiling, still dancing (soon). 

I’m living with mets. 



LEANNE 

NASH 

My breast cancer journey 

@cancER 

journeyuk 

I was diagnosed with High 

Grade DCIS the week before 

Christmas 2017. 

I’d had bloody discharge from my nipple 

and headed to the doctors in October. I 

was referred to the breast clinic where I 

underwent an ultrasound and core biopsy. 

The results showed nothing suspicious except 

the discharge coming from my breast. My 

consultant was sure it was nothing to worry 

about and was happy to leave me and review 

6 weeks later but I could sense something 

wasn’t right. 

The next day I called the hospital and told 

them I didn’t want to wait. I was allowed to 

see the Consultant again later that week. She 

agreed to a microductectomy to remove what 

she believed to be a papilloma. Unfortunately 

during that operation they discovered an area 

of suspicion and the biopsy results confirmed 

I was suffering with High Grade DCIS with 

necrosis. Initially I wanted to have a double 

mastectomy to reduce the risk as much as 

possible but my team at the hospital said they 

thought a wide local excision would work best 

for me. Despite my feelings, I agreed to their 

recommendation. 

The surgery meant that I would lose my 

nipple. I was devastated by this. Losing the 

nipple seemed to affect me more than hearing 

my diagnosis. 

Unfortunately the DCIS was more widespread 

than originally thought and the surgery did 

not achieve clear margins. I was told that I 

would require a full mastectomy. I was again 

refused the double mastectomy I wanted, in 

case infection in my healthy breast caused 

any delay to further treatment of the cancer. 

My mastectomy with immediate expander 

reconstruction was performed on 19 February. 

I spent one night in hospital and went home 

the next day. I had to sleep sat upright in my 

bed with loads of cushions to start with but 

gradually as the swelling reduced I was able 

to lie flat. It’s worth noting that the pain after 

mastectomy gets worse around day 3/4 when 

the nerve endings start to repair - but it’s fine 

you get through it. 

The expander was gradually filled to 450cc 

to match my other breast. I continued to 

push for the prophylactic or ‘risk reducing’ 

mastectomy on the healthy breast and after 

seeing the psychologist a couple of times 

I was approved. I waited 6 months for the 

operation and opted for a nipple sparing 

mastectomy on that side. Eventually my 

remaining nipple will be split and half of it will 

be grafted on to my ‘cancer boob’. 

I’m 5 days post mastectomy now and feeling 

good. I’m really pleased with the outcome 

so far. I’m now waiting for a date for my 

expander to be exchanged for an implant 

and once that’s complete the nipple sharing 

operation will complete the treatments. 

My advice to anyone newly diagnosed is to 

stay away from Google, remain positive, listen 

to your own body and always get a second 

opinion if you’re not happy. 

Love to you all xx 



Helen Bacon 

Adapting to my new ‘normal’ 

@Hamish_McHamish 

I was diagnosed with secondary breast 

cancer after finding a tiny pea-sized lump 

in my armpit in April 2016. I was physically 

fit, had just completed my first half Ironman 

triathlon, had no family history of breast 

cancer and no other symptoms. 

At the time of diagnosis, I had a 

mammogram that came back clear. I now 

know that this was due to breast density. 

Luckily the consultant decided to send me 

to ultrasound where the armpit lump was 

diagnosed as a lymph node. 

From there it was a barrage of tests, 

biopsies and scans resulting in the 

discovery of multiple tumours in my liver. 

All other areas appeared to be clear. The 

major milestones of treatment since then 

have included: 

• A lumpectomy and full lymph node 

clearance on the right 

• 6 rounds of EC chemotherapy 

(epirubicin and cyclophosphamide) 

• 15 sessions of radiotherapy to the 

breast 

• 6 sessions of GemTaxol 

chemotherapy (gemcitabine and 

paclitaxel) 

• 3 sessions of Carboplatin 

chemotherapy (that didn’t work) 

• Hysterectomy 

• Capecitabine chemotherapy 

• Microwave ablation of the liver 

• Palbociclib and Fulvestrant 

• Eribulin chemotherapy 

I am about to lose my hair for the third time 

but chose not to wear wigs or hats. Instead, 

I’ve had both sides of my scalp tattooed so 

that they are exposed when I am bald. In 

some small way this gives me control. 

I try my hardest to live with this disease 

and whilst it does now dominate all 

aspects of my life, I am determined that it 

will not stop me being me. To this end I 

have continued to work full-time, work in 

a voluntary capacity at the weekends as a 

coach for Pegasus Riding for the Disabled 

and above all, continued to exercise as 

much as possible. 

This includes swimming, running, cycling 

(and the odd triathlon where I combine 

all three), Pilates and horse riding. I firmly 

believe that this has made some of the 

most unpleasant side-effects of treatment 

more bearable. 

In order to encourage others to keep 

moving during treatment I have launched 

5K Your Way at Stretford Parkrun: 

www.facebook.com/Stretford5KYourWay/ 

I have three monthly scans and find it 

hard to plan anything beyond this date. I 

got married last year and try to live my 

life to the full. I’ve completely readjusted 

my attitude to life in order to cope with 

the mental and physical load this disease 

places on me, but life really does go on. 

I’m grateful to the staff at the 

Christie Hospital, Manchester 

for treating me with such care 

and compassion and believing 

that I still have a future, all be it 

probably a shorter one than I had 

anticipated. 

Never forgotten | 1972 – 2020 



Deciding which surgery 

can feel stressful, 

particularly when you only 

have a short period of time 

to make that decision. You 

need to take your time to 

make the right decision for 

you long term. The good 

news is that the decision 

for most patients is not as 

complicated as it may at 

first appear. 

CHOOSING THE 

RIGHT SURGERY 

FOR YOU 

by James Harvey 

Consultant Oncoplastic Breast Surgeon 

at the Nightingale Centre 

Manchester Foundation Trust 

Lumpectomy or mastectomy? 

If you are being offered a lumpectomy as a choice, 

the chances are this means the cancer is small 

and can be removed keeping your breast looking 

cosmetically good. From a cancer point of view you 

are as likely to be cured following a lumpectomy as 

you are from a mastectomy. Lumpectomy is smaller 

surgery and a quicker recovery. Most patients will 

need radiotherapy (X-ray) treatment to the breast 

following this, requiring 15 treatments over 3 weeks 

to the breast. Lumpectomy is the best option for 

most women. Mastectomy is a bigger operation with 

more recovery, a bigger cosmetic and psychological 

impact. This may be a better option if the cancer is 

widespread in the breast or you have a high future 

risk of breast cancer (e.g. lots of members in the 

family have had breast cancer before). 

If you are not sure, ask your breast care nurse for their advice. 

“I’ve been offered a 

mammoplasty to take out 

my cancer.” 

Is this a good option? 

If you have larger breasts then having a breast 

reduction (mammoplasty) can be a really good 

option. It will reduce the volume and weight of 

your breasts and will allow the surgeon to take 

the cancer out with a large potential margin of 

tissue around it. It also reduces the dose 

of radiotherapy that would be needed to 

penetrate a large breast. This may mean less 

redness and side effects from radiotherapy. 

Ask to see pictures of this 

type of surgery so you can get an idea of what it will look like. 

Immediate 

or delayed 

reconstruction 

Immediate reconstruction is done at the 

time of your mastectomy and delayed is 

usually done 6-36 months after cancer 

surgery. Immediate is the best option 

for most as it is one major operation to 

remove the cancer and reconstruct the 

breast. It also maintains the skin and look 

of the breast more effectively. Reasons 

to consider having a simple mastectomy 

followed by a delayed reconstruction 

include; wanting to have straightforward 

and short surgery and recovery, your 

surgical team recommend it to give 

the best cancer surgery if the cancer is 

extensive or they are concerned keeping 

the skin of the breast will put you at risk 

of the cancer returning, or if you have 

other things going on in your life and 

recovery from major surgery doesn’t fit 

at the minute. 

If you are not happy with the choices being offered or the service you are receiving, 

it can be reassuring to get a second point of view from a different surgeon or unit. 

Being fit helps you recover from surgery quicker so ask about “prehab” for surgery. 



Sarah Tebbett 

Breast cancer didn’t slow me down! 

In November 2015 when I was 38 years old I noticed 

a change in my left breast. My GP referred me to the 

local breast clinic for assessment because of my family 

history. When I attended the appointment it was in the 

evening and the clinic was running late. The consultant 

was initially unconcerned and felt that it might be a 

cyst but sent me for a mammogram and ultrasound 

scan to be certain. I was told at nearly ten o’clock that 

night that it was almost certainly breast cancer. 

Two weeks after the appointment it was confirmed that 

I had Her2+ invasive breast cancer in my left breast. The 

consultant advised that I would need a mastectomy 

followed by a course of chemotherapy and a targeted 

therapy called Herceptin. 

I had my mastectomy with immediate implant 

reconstruction on 23rd December 2015. With lots 

of help from my family I recovered well and began 

walking my children to school again after the Christmas 

holidays. I did have issues with the wound healing after 

surgery, which was treated with a continuous pressure 

dressing and a second operation to reclose it. My 

lymph nodes had been clear of cancer but six cycles 

of chemotherapy and a course of Herceptin were still 

required to reduce the chances of future recurrence. 

I was always very aware that I was one of the youngest 

patients in the waiting room. During the patient 

talk before chemo began the nurse advised that we 

shouldn’t let the grandkids visit if they were poorly… 

@BCCWW 

Search the hashtag #BCCWW 

@TebbettSarah 

There was no mention of what I should do as a mother if 

my three primary school age children were unwell! 

While I was going through treatment I found a cancer 

wellness programme that was being run by the Local 

Authority where I live. I enrolled and took part in 

activities such as Nordic walking, Tai Chi and a gym 

programme tailored to my needs. 

I stumbled across an active community of breast cancer 

patients on Twitter, where I found Jo Taylor and began 

following #BCCWW. I saw a tweet about a retreat that 

she was organising for breast cancer patients and was 

able to attend the dates so was lucky enough to be part 

of the first ever ABCD retreat, showing me my body 

was still able to do and enjoy exercise. 

I’ve continued to exercise, completing a half marathon 

for charity, and winning first place in a novice weight 

lifting competition. It’s not only improved my physical 

health and helped me to lose weight but supported my 

emotional health and helped me to stay positive. 

WHAT IS 

SCALP 

COOLING? 

Scalp cooling is a simple treatment that can help 

to prevent hair loss caused by chemotherapy. 

Not all chemo drugs cause hair loss, but for 

those that do, scalp cooling is the only effective 

solution to this problem. 

For more information please visit: 



Codilia 

Gapare 

@c_lashby 

cody 

What I did when I got 

sick and tired of being 

sick and tired! 

It’s 01:30am and I have spent the past 2 

hours writing about my treatment from 

start to finish. Realising that the reason I 

decided to write about my journey is not 

to moan about the things that I could not 

change, but to describe the things that 

taught me valuable lessons, I have binned 

the whole thing. Instead I am going to tell 

you what I did when I got sick and tired of 

being sick and tired! 

Treatment made me increasingly ill. I was 

spending days on end in bed, unable to 

eat because of nausea, unable to sleep 

because I was pumped full of steroids 

and unable to get comfortable because 

chemotherapy was making my bones ache. 

This was so relentless that on the days that 

I felt a little better all I wanted to do was to 

dress up and get out of the house. 

I decided to go in to work on the days that 

I was able. I was a single mother with 2 

boys to look after so I needed the money. 

But also, everyone at work treated me 

exactly like they had before my illness, so I 

felt like I could leave the “Cancer Cody” at 

home in bed on those days. ‘Lipstick and 

heels’ became my war-cry, as I focussed 

my energy on making myself look good 

and began to enjoy planning my outfits. 

I did not want people to know that I 

had cancer, so my hair and makeup had 

to be perfect. Once my hair, lashes and 

eyebrows fell out, looking ‘normal’ became 

a challenge. Wigs were easy, but eyebrows, 

and particularly eyelashes, were trickier. I 

guess it was this frustration that gave me a 

business idea. 

What if there was an eyelash 

that was easy for anyone 

without existing eyelashes to 

wear? What if I could come up 

with this lash that would stay 

in place all day and not droop? 

What if….? 

This little question gave me a new lease of 

life! On the days when I was too ill to go to 

work, I was no longer lying there looking at 

the ceiling. Instead I was making sketches 

of my ideas and drafting business plans. 

At any other time the enormity of what I 

was taking on would have scared me into 

behaving myself, but this was not any 

other time. I started researching my client 

base and writing to anyone who I thought 

had clout in the industry. I cannot tell you 

how many times I had doors shut in my 

face! 

You do not have to start a 

business or dress up every night 

while going through treatment, 

everyone is different… But for me, 

focusing on something other than 

the cancer allowed me to take 

back my life. Eyelure C-Lash Lashes 

are now widely available and even 

stocked at Boots! 



Samina 

Hussain 

@SamHuss 

26744130 

“ 

When I was diagnosed 

” 

with Breast Cancer in 

2014 I was 45 years old 

and my world fell apart. 

I felt so many emotions and wanted to know 

why this was happening to me. For the first 

few weeks I couldn’t discuss the “C word”. I 

needed time to understand how my life had so 

suddenly and dramatically changed. 

As I came to terms with my diagnosis and lifted 

my head, I found other woman that I could talk 

to. There weren’t many from the South Asian 

community so I presumed this type of Cancer 

did not affect them, which was far from the 

truth. My coping mechanism was to share my 

journey on Facebook. I found great strength in 

connecting with others and had an opportunity 

to say what I really felt. 

Once I had shared my journey, other woman 

connected and shared stories of loosing either 

their mother or sister to Breast Cancer. They 

felt that they had never been allowed to discuss 

their grief, and by sharing my journey I had 

given them a platform to acknowledge this. 

I had my lumpectomy first, then chemotherapy 

which has its complexities, and then finished 

with a month of radiotherapy. During treatment 

I also had a blood clot so spent many weeks 

in hospital. We all have trials and tribulations 

in life, but what truly gave me strength is 

surrounding myself with positive supportive 

people who did not judge me and just wanted 

to walk alongside me. I feel that God sent me 

an army. 

My faith teaches me that if you take from a 

system then you need to give back. I am the 

Co-founder of “Knit Your Socks Off” with Sbba 

Sidique, who knitted me some socks when I 

was having chemotherapy. We knit, stitch and 

crotchet thousands of items such socks for 

the local chemotherapy unit, baby packs for 

neonatal units, hand twiddle mitts for dementia 

patients, trauma teddies and angel cribs for 

the maternity unit. Our group now has 700 

members on Facebook. 

I have also set up the charity “Sakoon Through 

Cancer” with fellow breast cancer patient 

Lyna Butt, to support the POSAO community. 

“Sakoon” means tranquillity and to overcome 

any adversity in life you need peace in your 

heart to begin the healing process. South Asian 

woman ARE affected by breast cancer but 

due to the taboo of Cancer and the challenges 

society and culture places upon them, they 

have no voice. 

Since embarking on this journey I have 

I won the Sue Ryder Southern Woman 

of Courage Award, been on the Victoria 

Derbyshire programme, spoken on various 

radio programmes, and been invited to many 

community events to raise the profile of Breast 

Cancer and self examination in the South Asian 

community. 

Today I am a strong tall and bold woman 

who is grateful for everyone that has walked 

alongside me. Nobody should face Cancer 

alone. 

As a patient, you go through so much, but 

your family and friends come with you… 



POST-OP 

PHYSIO 

Physiotherapy can help with pain, stiffness, 

regaining movement, fatigue management, scar tissue, 

lymphoedema, exercises, function and pleasure. 

My Specialist interest in working with people who 

have had a cancer diagnosis comes from 25 years 

working in oncology and palliative care. Fascia, 

tissue under the skin, around and between our 

muscles, amongst our organs, nerves, blood vessels 

and attached to bone is almost everywhere in the 

body. This important “connective tissue,” embraces 

muscles so that they work efficiently and when we 

move, structures slip across one another smoothly. 

When we have an operation, accident or 

radiotherapy, the fascia can be scarred and get 

“stuck,” causing restriction in movement with or 

without associated pain. The post-op advice you 

have been given is likely to be based on knowledge 

of your surgery and treatment as well as what is 

considered to be best practice at the time. 

It’s useful to see how a person moves before their 

surgery. Multiple trips to theatre means more scar 

tissue, which can mean someone will need more 

physio. It can be useful for people to have physio 

before surgery to free things up as much as possible 

– prehab. Sometimes, I see people a few weeks after 

their treatment. Others may find their way to me 

years or decades later. Mostly, people don’t know 

that physio can help with scar tissue. Some will have 

had support from a lymphoedema specialist. 

Effects of surgery are not always localised although 

people often imagine that breast surgery will “only” 

affect the adjacent shoulder. It may also affect the 

legs or back and neck. 

The “hands on” techniques are effective on recent 

scars as well as those decades old! We are all 

different. Scarring is an important part of healing. 

Not all scars cause problems and not all are physical. 

From the moment our skin is cut the body starts 

to heal. It is essential that a “hole” in our skin, soft 

tissues or bones heals and forming a scar is part of 

this process. Many of the people who come to me 

for “hands on,” physiotherapy have problems with 

scarring that is restrictive, tight, makes them dislike 

their appearance, contorts their body out of shape 

or hurts – scarring which is not protective and useful. 

People may be doing useful stretches for their 

tightened areas, may be applying moisturizer which 

suits their skin, but others never look or touch and 

arrive with vulnerable dry skin or toughened hard 

tissue. 

It is not unusual for me to be the only person who 

sees and touches a scarred area. Sometimes family 

and partners will be kept away from the area out 

of embarrassment, care not to hurt, horror, fear, 

shame or disgust. For others, the healing area will 

be handled lovingly at home as well as respectfully 

by me. 

For many, scars are not just “skin deep.” Emotional 

scars associated with injury, surgery, radiotherapy 

and times of vulnerability can be the deepest. It 

is moving to hear people describe themselves as, 

“disfigured,” and a joy to see change for people who 

didn’t know that change was possible – or had given 

up hope. 

During a “course of treatment,” (ranging from an 

assessment to ask my opinion to several months of 

work together) people may feel comfort, improved 

flexibility, increased confidence in their body 

and its feel and appearance, reclamation of their 

sensuous and/or sexual life. Our sessions may also 

include movement, relaxation, breathing techniques, 

suggestions around stamina, celebrating triumphs, 

hearing people’s grief and change of expectation. 

Most often, I notice the sparkle returning to a 

person’s eyes and their choice of words changing – 

people speaking more hopefully and with increased 

confidence in their body. 

Leah Dalby MCSP 

Physiotherapist | LUNE VALLEY PHYSIOTHERAPY 

www.leahthephysio.co.uk 



Your 

rights at 

work when 

you are 

affected 

by cancer 

* The following 

resources are included in 

The Essential Work and 

Cancer Toolkit, a pack 

for employers that can 

be ordered from 

www.macmillan.org.uk/ 

worktoolkit 

FOR EMPLOYEES 

FOR EMPLOYERS 

• Work and cancer: a guide for people 

living with cancer 

• Work it out: essential questions to ask 

about work and cancer 

• Work it out for carers: essential questions 

for carers to ask about work and cancer 

• Working while caring for someone with 

cancer 

• Self-employment & cancer: living with 

cancer when you’re self-employed or 

running a business 

• Your rights at work when you’re affected 

by cancer 

• Managing cancer in the workplace: an 

employer’s guide to supporting staff 

affected by cancer 

• Top 10 tips for Line Managers 

• Cancer in the workplace (a DVD to help 

employers manage people affected by 

cancer at work)* 

• *You can order any of the resources 

online from www.be.macmillan.org.uk/ 

work. 

WHAT IS DISCRIMINATION? 

Discrimination can include: 

• An employer not making reasonable 

changes to allow you to do the job 

• An employer giving you a warning for 

having time off sick, but not taking your 

cancer diagnosis into account. 

• An employer suggesting that it would be 

better if you retired or stopped working. 

• Dismissal for a reason related to cancer. 

• Being demoted to a lower-paid/lesser job 

for a reason related to your cancer. 

• Being passed over for promotion in favour 

of someone with less experience or ability 

to do the job because of a reason related 

to your cancer (for example if you’ve used 

more sick leave than your colleagues). 

• Not being given a job because of cancer. 

• Being given no time off for appointments. 

• Having an unfavourable appraisal or 

performance review 

• An employer making it difficult for you to 

get any sick pay you’re entitled to. 

• Being harassed – this is when an employer 

or colleague bullies, intimidates, insults you 

or makes you feel uncomfortable so you 

feel you can’t stay in your job 

YOUR RIGHTS AT WORK 

If you have cancer and are in paid employment, your 

employer should try to help and support you. Where 

reasonable, they should make changes to let you do your job 

during and after your cancer treatment. 

Legislation protects you from being treated unfairly at work 

because of cancer. If you live in England, Scotland or Wales, 

the Equality Act 2010 protects you. 

The Disability Discrimination Act 1995 and its extension, the 

Disability Discrimination Order of 2006, protect you if you live 

in Northern Ireland. 

This legislation doesn’t just protect employees. It also 

protects job applicants and people who are self-employed. 



HOW AM I PROTECTED? 

Under the Equality Act 2010 and the Disability 

Discrimination Act 1995 (DDA), it’s unlawful for an 

employer to treat you less favourably (discriminate 

against you) because of your disability. If you 

have cancer, you are legally classed as disabled. 

Even if you’ve had cancer in the past, it has 

been successfully treated and you are now 

in remission, you will still be covered by this 

legislation. This means your employer must not 

treat you less favourably for any reason related 

to your past cancer. 

Which areas of employment 

are covered by this 

legislation? 

The Equality Act and the DDA cover all areas of 

employment (even when you no longer work for 

your employer). 

These include: 

• The recruitment process 

• Your terms, conditions and benefits. 

• Opportunities for promotion and training. 

They also cover you if you are treated less 

favourably than other workers because of your 

cancer. This includes harassment and victimisation. 

Your employer also has to make reasonable 

adjustments to make it easier for you to work. 

WHAT ARE REASONABLE 

ADJUSTMENTS? 

Both the Equality Act and the DDA require your 

employer to make reasonable adjustments to 

your workplace and their working practices. 

They are required to do this when the workplace 

or their working practices mean you are at 

a substantial disadvantage because of your 

cancer, compared to those who don’t have 

cancer. 

There is no fixed description of what a 

reasonable adjustment is. But it will depend on 

things such as: 

• How much the adjustment costs 

• How much the adjustment will benefit you 

• How practical it is to make the adjustment 

• Whether making the adjustment will 

affect your employer’s business, service or 

financial situation. 

Your employer does not have to make a 

reasonable adjustment unless it knows (or 

should reasonably know) that you have cancer. 

For more information visit: www.macmillan.org.uk/ 

information-and-support/organising/work-and-cancer/ 

information-for-employees/your-rights.html 

Visit: www.workingwithcancer.co.uk for more information 

This information is not a substitute for legal advice. If you need legal advice, please contact a solicitor. While we do 

everything we can to provide the highest quality information, ABC Diagnosis & Macmillan will not accept any liability for the 

use, or inability to use any information provided in this editorial. 



Medical (Drug) 

Therapy for 

Breast Cancer 

The three main 

modalities 

for treating 

breast cancer 

are surgery, 

radiation therapy 

and medical or 

drug therapy. 

80% 

of breast cancers are 

Estrogen Receptor 

(ER) positive 

50% 

of breast cancers are 

Progestogen Receptor 

(PR) positive 

These receptors are proteins present on the centre part of the cancer 

cell, and such tumour cells “feed” from estrogen, the female hormone. 

17% 

of breast cancers are positive 

for the HER-2 receptor 

protein found on surface 

of cancer cells which 

makes the cancer grow 

15% 

15% of breast cancers 

are negative for ER, PR 

and HER-2 receptors 

KNOWN AS ‘TRIPLE NEGATIVE’ 

ER +ve cancers can be treated with “hormone 

therapy” or drugs that either block the ER (e.g. 

Tamoxifen) or remove oestrogen from the system 

(e.g. Letrozole). HER-2 receptor +ve cancers can 

be treated with “anti-Her-2 therapy” or drugs 

that block the HER-2 receptor (eg. Trastuzumab - 

Herceptin®). These treatments are often combined 

with “chemotherapy”. 

“Chemotherapy” or “non-targeted systemic 

therapy” usually refers to drugs that kill cancer cells 

or stop them growing, but are less “targeted” than 

e.g. hormone therapy and have more side effects 

because they can also damage other cells in the 

body such as hair follicles or immune system cells 

leading to side effects such as hair loss or risk of 

infection. Such drugs can be intravenous or tablets. 

Different chemotherapy drugs work in different 

ways leading to different side effects and larger 

doses cause more side effects than smaller doses. 

Most side effects are temporary. 

“Adjuvant” medical therapy refers to the use of 

any treatment (e.g. chemo, hormone, anti- HER- 

2) after surgery has removed the tumour. This is 

to kill microscopic cells which may have spread 

via the blood stream to other parts of the body 

and, if left untreated, could grow into secondary 

tumours. Most adjuvant chemotherapy courses 

last approximately 6 months and can involve 

multiple drugs and different regimens. Adjuvant 

chemotherapy reduces the risk of developing future 

secondary cancer by approximately half; e.g. If, after 

surgery, a patient has a future risk of secondary 

cancer of 20%, then 6 months of adjuvant 

chemotherapy reduces the risk to approximately 

10%. Sometimes chemo is given prior to surgery to 

treat the whole body and shrink the tumour first. 

Adjuvant hormone therapy usually means taking 

a tablet (e.g. Letrozole) for 5 to 10 years. This also 

reduces the residual risk of secondary cancer by 

half over a 10 year period. 

Patients who develop secondary breast cancer 

may receive chemotherapy, hormone therapy 

or anti HER-2 therapy as part of a treatment 

programme for the secondary tumours in other 

parts of the body (e.g. the bones). The drugs and 

treatment programme is chosen by your oncologist 

based on the nature of the cancer, potential side 

effects and likelihood of response to treatment. 

Patients normally have scans to assess response. 

“Partial remission” means that the tumours shrink 

and become dormant or stable on scan. Medical 

therapy is often combined with radiotherapy and 

surgery for the best outcome and to keep patients 

in remission for prolonged periods. 



@duck 

girl73 

BETH 

ROBERTS 

I have always enjoyed 

exercise and led a 

healthy lifestyle, so it 

came as a shock when 

I was diagnosed with 

“de novo” metastatic 

breast cancer in 

March 2015. 

I am 45 years old and I live in Liverpool. I am 

a mother to two beautiful children and have a 

wonderful husband, Oliver. I have always enjoyed 

exercise and led a healthy lifestyle, so it came as 

a shock when I was diagnosed with “de novo” 

metastatic breast cancer in March 2015. I had 

been training for a half marathon when I had to 

stop mid-run due to excruciating back-pain. I was 

diagnosed with a back strain, but later discovered 

that I had actually broken my back in three 

places due to the extensive spread of cancer in 

my bones. 

I had an emergency corpectomy to remove the 

crumbling vertebra that was pressing on my 

spinal column. I also had a hip replacement to 

prevent fracture. My children and family were 

hugely impacted by seeing me immobilised. The 

early days were very tough, as I had to regain 

my fitness and adjust to what this diagnosis 

meant for my future. Life felt like it had shrunk. 

I started to reach out to other secondary breast 

cancer patients via YBCN and Jane McClelland’s 

facebook group, which helped. 

Initially I felt that I was being treated quite 

passively by my medical team, so I moved my 

treatment to The Christie, which is a centre of 

excellence and has strong links to trial teams to 

access newer drugs. I had my primary tumour 

removed because my oncologist felt it would 

improve my outcome. I am currently on the 

B-AHEAD3 trial, which focuses on diet and 

exercise, and finding it a very positive experience. 

I believe in exercise, diet and off-label drugs to 

try to improve my day-to-day well-being and, 

hopefully, my long-term outcome. I know I am 

very lucky to be looked after by such a dedicated 

team. 

Day-to-day life can go from feeling almost 

“normal” where I can pop to the gym, cook tea, 

and do some domestic chores, to being unable 

to do anything due to the side effects of the 

drugs. I now try not to over schedule myself and 

have many rest periods. I have learnt in the last 

three years that every patient has an individual 

path, and whilst we know the median response 

to a given drug, we do not know how we will 

respond as an individual. I have had to learn to 

live more in the moment, and try not to focus on 

the future. 

I had to give up work, but as a research ecology 

student I continue to study. I also constantly 

research about my cancer. To start with I felt that 

increased knowledge about drug options and 

trials could help me, but I quickly discovered the 

lack of research money for secondary breast 

cancer, limited drug options, lack of awareness, 

and strict trial criteria. 

It’s very frustrating, 

which is why I decided 

to advocate for 

@metupuk to try to 

improve survival 

outcomes for all 

secondary breast 

cancer patients. 



JULIE WRAY 

INTRODUCING 

SANDRA AND NORMAN 

@JuWray 

“ 

Despite having had two 

” 

different cancers, breast 

cancer in 2006/7 then bowel 

cancer in 2016, I am alive and 

kicking and most grateful! 

I gave my cancers names… Sandra was my 

breast cancer. She came into my life out 

of the blue the day after my 49th birthday. 

Removing her involved 4 operations, 

chemotherapy, and radiotherapy, followed by 

7 years of medications. 

My world came crashing down, being a 

younger woman with two teenage sons, a 

husband, and a fabulous career that I loved. 

We also had a wonderful family holiday 

planned. I can remember clearly the surge of 

anger and desperation for it all to go away as 

quickly as possible. I had no time to be ill. 

One of the hardest things was telling my 

family. Our sons were aged 15 & 18 but they 

were amazing and so positive! They had to 

grow up and take on more roles in our home 

but looking back now it was a good thing all 

round as they helped to diffuse my anger. 

One of my goals was to able to relax and 

feel calm so that I could accept treatments 

rather than feel resistance, so I started yoga 

classes with a friend. It helped me so much 

that I still go to yoga now. 

After almost a decade of surviving Sandra, 

Norman decided to appear in my bowel 

in 2016. Norman was equally unwelcome 

but this time I felt no anger or surges of 

frustration. I did feel that my body had let me 

down again but remarkably I accepted the 

situation quite quickly. My biggest anxiety 

was chemotherapy and I was relieved when 

the bowel surgeon and team discovered that I 

only needed surgery. 

It was a big operation involving removing 

part of the rectum and a section of the large 

bowel, and my recovery was tough. Perhaps 

being ten years older, maybe the enormity of 

the operation, or simply expecting too much 

of myself. Being able to see what you have 

achieved in a day no matter how small can be 

comforting, and I learned the value of being 

kind to myself. 

My biggest comfort, after family and friends, 

was humour. I can always see a funny side of 

things! I made notes of things that made me 

laugh or smile and I also listened to music and 

songs that cheered me up. I avoided people 

or things that made me feel glum or dragged 

my mood down and was quite ruthless at 

times, even stopping watching the news and 

reading newspapers! I created a fun bubble 

and mixed with people who made me feel 

good where I could. 

Now I am 61yrs old and last year I retired, 

partly influenced by my experiences with 

Sandra and Norman… I love life and feel there 

is so much more to learn and experience. I am 

healthy and fit and want to try out new things 

so I am because I can! 



FIONA 

MORRISON 

Getting ‘back to normal’ 

@marmite 

frog27 

On Wednesday 14th December 

2016, I ran for a train. 

Later that evening, I ruefully felt my bruised 

and tender chest muscles – that would teach 

me to run without a sports bra on I laughed. 

I wasn’t laughing a few days later, when I felt a 

hard lump on my left breast. I was confident it 

was a cyst. That confidence evaporated when 

the Dr and nurse doing my ultrasound went 

very quiet and explained that they needed to 

perform a biopsy. 

I was 43, about to turn 44, and had never 

regularly checked my breasts – too scared in 

case I found something – an irony not lost on 

me as I prepared to devote 2017 to the rigid 

scheduling of hospital appointments. 

The biopsy and subsequent scans 

showed I had Her2+ breast cancer. Having 

chemotherapy first would give me a better 

chance of avoiding a mastectomy. 

Everyone has a different experience of 

chemotherapy. I was prepared for nausea 

but never once felt queasy. I wasn’t prepared 

for the loss of my fingernails, the increasing 

stiffness in my joints, or months of nose 

bleeds. But the hardest thing was the social 

isolation as I desperately tried to avoid any 

potential source of infection that could 

hospitalise me with neutropenic sepsis. 

Chemotherapy reduced my tumour and I had 

a Wide Local Excision with a Sentinel Node 

Biopsy to see if more lymph glands would 

need removing. Thankfully they didn’t, and 

barring a weeping seroma (pocket of fluid) 

and some burst stitches under my arm, I 

entered the second half of the year preparing 

for radiotherapy. 

I was fortunate with my radiotherapy – I 

suffered no fatigue – and only minimal skin 

discomfort. I actually came to enjoy my daily 

routine of driving to the hospital early enough 

to find parking, then treating myself to coffee 

at the café. The Beatson hospital had gone 

from a place that saw me shaking with nerves 

as I entered, to a place where I felt very at 

home. 

Her2+ breast cancer is also treated with a 

wonder drug called Herceptin. Her2+ used to 

have a poor prognosis and a high rate of early 

recurrence – Herceptin has changed – and 

that knowledge made my three weekly trips 

for a five minute injection all worth while. In 

March 2018 I had my final treatment. 

“Back to normal!” 

people say… 

But normal has gone. It took a long time 

to get used to being in crowds and social 

situations again – it took a long time for 

cancer not to be the first thing I thought of in 

the morning. I struggled with anxiety about 

recurrence and spread. My wonderful breast 

care nurse found help and support for me – 

and I now count anti-depressants as part of 

my treatment for breast cancer. 

I still run for trains. When I do I feel the pull of 

the surgery sites on my left breast – I feel the 

stiffness in my hips – and I feel the breath in 

my lungs – and I am thankful. 



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Radiotherapy 

TREATMENT for 

Breast Cancer 

Radiotherapy is a treatment for cancers, 

using X-rays, or electrons directed at the 

cancer to destroy its DNA and kill it. 

It is a targeted form of treatment and is 

one of the most successful forms of anticancer 

treatment. 

It is used in breast cancers to reduce the risk of 

relapse within the breast/chest wall after surgery 

for early-stage disease (adjuvant treatment) or to 

control the symptoms of more advanced disease 

(palliative treatment). 

Adjuvant radiotherapy is almost always required 

after breast conserving surgery. Treatment is 

delivered either to the entire breast or to part of 

it depending on your age and stage of the cancer. 

Some women may need it to the chest wall after 

a mastectomy. Depending on the involvement of 

nodes, treatment to the underarm (axilla) or lower 

part of the neck (Supraclavicular Fossa or SCF) 

may also be necessary. 

Standard radiotherapy is delivered every weekday 

for 15 sessions (3-weeks). Some women may be 

offered an extra 4-5-session ‘boost’ to the part of 

the breast from which the cancer was removed. 

Each session lasts for 5-10 minutes. 

As it is a targeted form of treatment, your 

treatment needs to be planned to ensure that it is 

delivered to the correct area and also to minimise 

radiation to nearby normal organs and tissues. This 

requires a CT-scan of the chest and is followed by 

placing 2-3 small permanent tattoos, which help 

correct positioning during each session. Treatment 

starts about 1-week after planning. 

To minimise the risk to the heart, we may use DIBH 

(Deep Inspiration Breath Hold) technique during 

planning and treatment for left-sided cancers. Your 

radiographer or Clinical Oncologist will explain this 

to you if required. 

The main side effect of treatment is a skin reaction 

similar to sunburn that can last for a few weeks 

after treatment but almost always resolves. This is 

managed by using moisturisers. Some women feel 

tired but most are able to continue life as normal. If 

the SCF is treated it may cause a few days of sore 

throat. Severe reactions are rare but can be treated. 

As a long-term consequence of radiotherapy, the 

treated skin can become firm, the breast can shrink, 

and the skin can thin and appear paler with visible 

small veins. Such changes are usually mild and can 

take many months or years to develop. Twinges of 

pain, tenderness or odd sensations are common in 

the months after treatment and will often disappear 

on their own. Rib fractures are very rare. 

A small part of the lung just under the ribs can form 

a scar tissue after radiotherapy, but it rarely causes 

any symptoms. Care is taken to reduce the dose to 

the heart for left-sided treatments (see above) but 

the dose can never be zero. However, with modern 

techniques the risk of damaging the heart is very low. 

Like chemotherapy, radiotherapy can increase the 

risk of second cancers within the treated area. 

This risk is less than 1 in 1000 and the benefit of 

treatment far outweighs this. It is estimated that 

adjuvant radiotherapy reduces the risk of a relapse 

within the breast/chest wall by two-thirds (around 

66% reduction in risk). 

Palliative radiotherapy is given to control 

symptoms such as pain from secondary cancer in 

the bones, bleeding from skin lesions or to control 

secondary cancer in the lungs. 

A highly targeted form of such treatment called 

SBRT (Stereotactic Body Radiotherapy) may be 

suitable for some patients with a small number 

to secondary cancers and there is some evidence 

that this may be better than standard palliative 

treatment. Your clinical oncologist will discuss the 

appropriate treatment with you. 



@sarah 

coombes79 

SARAH 

COOMBES 

MY POST MASTECTOMY JOURNEY 

I was 35 when I was diagnosed with invasive cancer 

in my right breast in December 2014. I was offered 

reconstruction but knew immediately that this was 

not for me. My surgeon showed me reconstruction 

photos, encouraged me to hold silicone implants, 

explained how safe and durable they were, and also 

discussed options to increase and/or lift my left 

breast at the same time. Instead, I requested that 

my left breast be removed too so that I could be 

symmetrically flat. Hearing what I wanted, the breast 

care nurse warned that I wouldn’t be able to find 

“nice clothes”… 

My team’s views on living flat bothered me so 

much, that two weeks later, just before my double 

mastectomy, I set up my website 

www.flatterfashion.co.uk so no other woman would 

think that she should be ashamed of her body simply 

because she doesn’t have two breasts. 

My website is all about sharing tips to help women 

develop confidence to try on new things, and not 

feel that they should cover themselves up and hide 

who they are. Finding clothes to feel confident in can 

play a huge part in accepting your new body after 

cancer treatment. I actually prefer being flat, and I 

love experimenting with different styles that I would 

never have worn before my mastectomy. 

The website also features seasonal fashion blogs 

with tips and photos from members of the Flat 

Friends UK closed Facebook group. Contributions 

come from ladies of different sizes and include styles 

modelled by women who have had both single and 

double mastectomies, some of whom also wear 

prostheses. 

I have been a trustee of Flat Friends UK since it 

became a registered charity in 2016. We support 

women who have had 

a single or double 

mastectomy and 

are living without 

reconstruction, or are 

facing that decision. 

To add movement and 

volume look for: 

• A-Line tops and swing dresses 

which flare gently from the chest 

• Bubble hem tops, or dresses 

with elasticated waistbands 

• Off-the-shoulder, halter-necks 

and boat-necks all add width 

across the chest 

• Avoid darts and princess seams 

where you are flat as they may 

not hang properly. 

Floaty fabrics such as crepe, chiffon 

and light cotton create movement; 

jersey drapes and gathers to create 

shape; lace and embroidered 

layers add interest, and textured 

knits add depth. Layer contrasting 

textures and colours to add depth 

and shape. 

Extra features which suit 

a flat chest include: 

• Double breast pockets (or single 

on your flat side) 

• Gathered or cowl necklines 

• Frills and pussy bows 

• Pleats and pin tucks 

• Contrasting sleeves 

Be proud of your chest! 

Decorate it! Look for: 

• Patterns to draw the eye around 

your outfit 

• Contrasting patterns on the bib 

or yoke 

• Appliquéd designs such as 

sequins, gems and beading 

• Statement necklaces or long 

pendants 

• Accessories like bold patterned 

scarves 

If you have had a single 

mastectomy you could 

also look out for 

asymmetrical designs: 

• Pleats, draping or frills from one 

shoulder 

• Contrasting panels/bold patterns 

to decorate your flat side 



EXERCISE AND 

MOVEMENT 

Physiotherapy after surgery is important - it is clear 

that people who have attended to some movement 

most days, are better off than those who haven’t. 

Whilst working in a breast surgery and 

reconstruction team*, I was fortunate to work with 

people from diagnosis through to many decades 

post-surgery. It was clear that people who had 

attended to some movement most days, were 

better off than those who hadn’t. Even decades 

later, having had a daily deliberate stretch/move 

appeared to make a difference, both to the range 

of movement and the quality. Increasingly there is 

research showing the benefit of exercise. 

Perhaps you saw a physio before your surgery, or 

afterwards to check how you were moving before 

surgery and after. The information you are given by 

your team is likely to be relevant for your operation, 

how it went and what is considered best practice 

at the time. 

The exercises in the post-op leaflets will often 

include things like lifting your arm up or out to the 

side, but as time passes and there are no surgical 

restrictions on what you do, other movements my 

be useful, too. 

Nature is full of spirals and that includes our bodies. 

The way we move, the way muscles are. Watch 

children rolling and crawling, people stretch as they 

yawn and reach their arms up joyfully, cats rolling 

and stretching, animals rubbing themselves on 

posts in fields – stretching in spirals can feel great 

when our tissues are free, hydrated and extensible. 

You know better than I how radiotherapy and 

surgery can affect how the body feels and moves, 

so if things feel stuck or tight, you may need some 

specialist hands on work with someone confident 

and competent to work with you after treatment. 

*During this time, I kept data for everyone and it 

appeared that there were 5 factors seeming to 

indicate someone might be more likely to need 

“hands on” treatment to optimise their recovery 

after surgery and/or radiotherapy: 

• More than one episode of surgery 

• Wounds which were slow to heal or 

became infected 

• Any axillary node surgery 

• Reconstruction using a body part 

• Radiotherapy 

• (I also work with people with cording 

after chemo, which isn’t included here) 

One to one advice is likely to be the best, but I 

would encourage you to find activities, exercises, 

movements which give you pleasure, confidence 

and perhaps delight in your precious body – the 

place where you live and experience the world. 

Chose something you enjoy – and do it! Build up 

your activities incrementally and “listen” to your 

body – which may feel different every day. People 

often ask me, “how many,” or “how long?” Quality 

rather than quantity – but as you regain your 

fitness, you’ll get both! 

Take heed of the advice re avoiding lymphoedema, 

but try not to worry about it. Being proactive and 

having knowledge helps. Importantly, remember 

that thorough healing is a goal and not a race. 

If cure has not been possible for you, moving and 

exercising can still be valuable to avoid stiffness, 

to optimise breathing, bowel function and skin 

integrity. “Fit” muscle metabolises oxygen more 

efficiently than “unfit” muscle. 

Please feel free to make enquiries or share 

information to enrich my understanding. 

Leah Dalby MCSP 

Physiotherapist | LUNE VALLEY PHYSIOTHERAPY 

www.leahthephysio.co.uk 



Fast forward a week and I was sitting with 

my husband in the ‘Bad News Room’ at 

our local hospital’s Breast Clinic. I’d had an 

examination, mammogram, ultrasound and 

biopsy before being told “I’m sorry Victoria 

but it’s cancer”. The world stood still. 

Mum to two small boys, aged two and four, 

my full focus was on staying alive for them. 

I was utterly terrified. I asked the medical 

team to throw everything they could at me. 

Surgery, chemotherapy, radiotherapy and 

hormone therapy followed. 

I was surrounded by people who loved me, 

who wanted to help me but I’d suddenly 

been thrown onto a different track to 

everybody else. I needed to find people my 

own age who’d also had a breast cancer 

diagnosis. I was the odd one out at the 

hospital, a generation or more younger 

than everyone else. I was also the odd 

one out at the school gate; the mum with 

cancer. 

In 2012 I set up The Younger Breast 

Cancer Network UK to help connect 

younger women with breast cancer. This 

disease hits young women at the busiest 

time of their lives, when they’re going 

full throttle with careers, raising young 

families, pregnant or maybe dreaming 

of motherhood. When they are dating, 

forming and nurturing relationships. We 

need to talk about fertility, pregnancy, 

dealing with young children. About 

careers, dating, new relationships, early 

menopause and suddenly facing our own 

VICTORIA 

YATES 

Younger Breast Cancer Network UK 

On a Saturday evening in March 2010 I went 

to bed early to escape Match of The Day 

on the telly. I check my breasts regularly 

but that night, for the first time, at age 36, I 

found a lump. 

mortality. We need to talk to other women 

going through the same things. 

YBCN is based on Facebook, because 

it’s free to use. We aren’t a charity, our 

budget is zero, it’s all totally voluntary. Our 

structure includes various private groups 

depending on stage of treatment, stage of 

disease, and special interest groups such 

as fertility, research and regional groups. 

Only members can see posts. 

We have strict community guidelines and 

a fabulous, dedicated team of volunteers 

from within the membership, who join 

members, moderate posts and keep 

YBCN on track. It’s a difficult job for our 

admin team. We see the freshly diagnosed 

women, we see women feeling that 

their dreams of being a mum have been 

crushed, we go through their treatments 

with them, reliving our own time and 

again, and we see the torment of friends 

diagnosed with Stage IV cancer. We join 

members to our End of Life group so they 

have somewhere safe to talk. Hardest of 

all, we protect our members’ privacy by 

removing their accounts when they die. 

Peer support is incredibly important, 

providing comfort, information, 

understanding and community. 

I am extremely proud of YBCN, of our 

admins, of our members and of how we 

have helped thousands of young women 

who would otherwise have felt isolated and 

alone when they most needed friends. 

@YBCN_UK 



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@???? 

Jo 

NOBLE 

One morning in early 

October 2016 it crossed 

my mind that the weird 

lump I’d noticed under 

my arm might be a little 

bit bigger than the last 

time I had noticed it. 

I was 38, had two kids, a husband and a very 

demanding dog… With such a hectic family life it 

was amazing I noticed it at all! 

Naturally, not being on my boob, I had absolutely 

no inclination to think it was anything other than 

a weird lump under my arm. I had a cursory feel 

around, but my ‘assets’ were rather large and 

frequently a bit lumpy. Nothing felt new, nothing 

felt unusual… 

One appointment with my GP later and I was 

given ten days of antibiotics for an infected ingrowing 

hair. If the lump was still there after I’d 

finished the course then I should go back again. I left 

that doctors surgery knowing that the lump wasn’t 

an infection and that antibiotics wouldn’t help. 

When I returned to the doctors I was referred 

to the Breast Unit at my local hospital. The 

appointment came through within the week, and 

before I knew it, I was sat in the waiting room full 

of people looking just as terrified as I did. When 

I visit that waiting room now I always try to look 

at the other ladies and smile, just to let them 

know I’ve been where they are, and they can get 

through it! 

At the beginning of November, less than three 

weeks from my first doctors appointment I heard 

the four words that change your life ‘you have 

breast cancer’. Two weeks later I was given the full 

results of the scan, biopsies and blood tests. I had 

stage three Triple Negative breast cancer, with the 

initial tumour having spread to my lymph nodes 

affecting 17 of 21 located under my arm. 

Around 14 days after diagnosis, in early December 

2016, I had a right mastectomy and lymph node 

removal and began the next step in my treatment 

plan – FEC-T chemotherapy. 

Chemo is just as you would imagine – pretty awful! 

However, its totally do-able. When times got 

tough and the pain and nausea became too much, 

there was a voice in the back of my head that said 

‘this wont last forever, you WILL feel better’ and it 

was right, I did. 

After finishing six rounds of chemo I moved on 

to radiotherapy to thoroughly nuke the original 

site and I was rewarded with a lovely sun burn 

on my neck. Follow the instructions from the 

radiographers and make sure you moisturise! 

Right now I’m waiting for my next surgery. I have 

a risk reducing mastectomy and reconstruction 

scheduled thanks to my faulty BRCA gene! 

After all of my active treatment finished I found 

re-entry in to this new normal the most difficult 

part of the ‘journey’. Make sure you have someone 

to talk to, and make use of any support groups, 

be them digital or real life! More often than not 

someone there has been through what you going 

through and can lend a shoulder to cry on and an 

ear to listen when you need it. 

I am now two years down the line, 

feeling brighter and happy to still be 

here. I’m not naive enough to think that 

I am done with cancer, but I’ll be sure to 

keep an eye out for any trigger signs and 

symptoms and do all I can to make sure it 

stays away for as long as possible! 



EMMA 

ROBERTSON 

The show must go on 

@little_emmabird 

Battered and bruised and shell-shocked 

after multiple biopsies, I messaged my 

boyfriend while he was with Mumford and 

Sons in America to tell him I’d just been 

diagnosed with breast cancer. 

I was 31, it was 2013, and my boyfriend 

and I had decided we liked our friends 

new baby so much that we would stop 

trying not to make our own. We lived on a 

little Narrowboat in London and finances 

had been tight but he’d just gotten some 

session work with a band called Mumford 

and Sons. He was being paid really well 

for touring the world playing viola in their 

string section and I was hopeful that life 

was getting easier. But 2013 didn’t really 

get easier. 

I messaged my boyfriend while he was 

with the band in America to tell him I’d just 

been diagnosed with breast cancer. I flew 

out to meet him for a week in New York, 

just days after my diagnosis. Bandaged 

and sore from multiple biopsies. Battered 

and bruised and shell-shocked. 

Primary treatment was a whirlwind of 

IVF, cytotoxic drugs, ridiculous hospital 

administrative mistakes, surgeries, and 

radiation. Life didn’t stop and amongst 

all of this my Grandma was unwell with 

dementia, my sister got married, Mike 

(my boyfriend) headlined Glastonbury on 

the Main Stage with the Mumford lads, 

I worked as much as I could between 

treatments because I wasn’t entitled to sick 

pay or holiday pay, and sadly, towards the 

end of the year, my Grandma died. When I 

sat next to her bed and told her how much 

we were going to miss her, she asked me 

when I’d cut all my hair off. 

My cancer was mixed ductal and lobular 

and because that was unusual for my 

age I was eligible for genetic testing that 

showed nothing out of the ordinary. I was 

ER/PR+ but HER2- and my team were 

confident that my treatment had been a 

complete success so Tamoxifen was just a 

precaution. It was a big shock to everyone 

when I was back in the hospital for scan 

results at the beginning of 2015 to be told 

that the cancer had spread, was now in 

my lungs, liver, and bones, and couldn’t be 

cured. 

My Oncologist was really clear from this 

point that my treatment was palliative. I 

was put on an oral chemotherapy called 

Capecitabine that worked well until my 

pleural effusion increased and had to be 

drained, revealing that the liquid was full of 

cancer cells. Weekly IV Paclitaxel followed, 

which again worked it’s magic so that I 

could return to a “new normal”. 

I am currently stable on a combination 

of Letrozole (an endocrine therapy) and 

Palbociclib (a CDK4/6 inhibitor) and 

hope that I can stay on this therapy line 

for a long time. Under NICE guidelines I 

wouldn’t meet the eligibility criteria for this 

treatment. 

It’s a difficult world to inhabit and I am 

very aware that my Oncologist won’t be 

able to keep blithely insisting that there 

are still “lots of options” for my continuing 

treatment. 

At some point the doctors will say 

that there is nothing more they 

can do to help me. 



Shazia 

Calvert 

Davies 

My cancer story began on an icy 

tennis court in February 2018. I’d 

been ignoring a lump for a couple 

of weeks. It was painless, hard 

and alarmingly large. I played 

competent tennis that day and 

returned home with a spring 

in my step. By 4pm I had been 

diagnosed with breast cancer. 

The tremors of cancer run through your entire 

tribe of people. To me it seemed as though the 

terror ran through everyone but me. I had a 

mission to beat it. A mission to spare loved ones’ 

pain. A mission to smile through it. 

The smiles weakened as the following week, 

my diagnosis worsened. I had Grade 3, Invasive 

Ductal Carcinoma, and it was ‘triple negative’. 

This cancer tests negative for oestrogen, 

progesterone and HER-2. Worse, it was already in 

my lymph nodes. 

The only treatment plan for this type of cancer was 

to match its aggression. Poison, cut, burn, poison. 

First, there were 5 months of intense weekly 

chemo. Then, there would be a mastectomy with 

potential lymph node clearance to remove what 

was left. This would be followed by radiotherapy 

and then oral chemo to take out any microscopic 

remnants. 

I had my first chemo on March 6, 2018 after 

surgery to insert a port in my chest. Unfortunately 

I was hospitalised with a severe GI reaction to the 

chemo for six days. I was only home for three days 

before the tremors began and my temperature 

started to soar. Pain relief and high doses of 

antibiotics weren’t derailing neutropenic sepsis. 

At last, just before they were going to transfer me 

to ICU I started to respond. 

The issues didn’t cease after sepsis. I had a severe 

allergic reaction to my Plan B chemo drug. So 

we moved on to Plan C… Miraculously, my body 

accepted this treatment and though physically I 

had taken a battering, I remained mentally robust. 

This manifested in my writing a blog about the 

surprising humour with which I chose to see my 

journey ‘Breast Cancer Smiles’. 

Before I knew it, I was lying on a gurney staring 

at my anaesthetist prior to a mastectomy and 

reconstruction. And there was yet more bad 

news… Though the cancer had retreated it was 

still present. They found two more lymph nodes 

in surgery and had to do an axillary clearance. I 

had just become high risk for a recurrence. 

It was barely 6 weeks before I embarked on 

radiotherapy. Physiotherapy helped force my arm 

to reach the stirrups for treatment. Nothing had 

gone to plan so far and it wasn’t about to change 

now. I had a ‘moderately severe’ reaction. 

This culminated in a great deal of swelling and 

pain. Nerve pain also persisted. As my reaction 

started to die down, I began oral chemo in 

February 2019. This treatment ended in June 

though no one will say I’m cancer free yet. For 

that diagnosis, I continue to play the waiting 

game. 



(BC 

Related Lymphoedema 

Breast Cancer 

What is lymphoedema? 

Lymphoedema is a chronic, long-term swelling that can 

affect any part of the body, although it is commonly seen 

in an arm or a leg following treatment for cancer. 

The lymphatic system plays a very important part in the 

way that the body functions, for two reasons: 

• It helps to drain away fluid, proteins and waste 

from the tissues. 

• It is part of the body’s immune defence system 

against infection. 

Lymphoedema can develop when the lymphatic 

drainage system is unable to work effectively because 

it has become damaged, overloaded or its function has 

been impaired. 

Why does IT DEVELOP? 

Surgery and/or radiotherapy treatment to areas of 

the body where there are lymph nodes (e.g. for the 

successful treatment of breast cancer) is a common 

reason for the onset of lymphoedema. Such 

damage to the lymphatic drainage system can result 

in an increase of fluid accumulating in the tissues 

(arm/breast). 

Swelling will develop when the lymph vessels cannot 

keep up with the extra demands on their drainage 

capacity. Swelling most frequently develops in the 

arm and/or hand but can also develop in the breast 

tissue or on the chest wall or back. 

Incidence of BCRL: 

80% 

of women 

NEVER develop 

BCRL 

HOWEVER 

Around 

21.4% 

breast cancer 

patients 

will develop 

lymphoedema 

at some point 

In the early stages, the arm can begin to feel heavy 

and uncomfortable without the presence of visible 

swelling. Once swelling does develop, it can be soft 

to the touch and may come and go – especially 

overnight when the arm is partly elevated. Over 

time, if not treated, the swelling can become a more 

constant feature and the normal architecture of the 

limb (visible tendons, veins, knuckles, etc.) become 

less noticeable. With time the tissues under the 

skin may start to feel firmer and thickened and the 

skin can become dry. The arm may feel increasingly 

heavy and uncomfortable and normal function 

and range of movement of the arm may become 

affected if the swelling progresses. 

Around 

18.9% 

of patients 

will develop 

it within 2 

years of 

treatment 

Around 

5.6% 

of patients 

undergoing 

sentinel node 

biopsy (SNB) 

will develop 

lymphoedema 

Around 

20% 

of patients 

develop 

lymphoedema 

after axillary 

node clearance 

(ANC) 

even after axillary node 

clearance and radiotherapy. 

BCRL can often take months/years to develop. ALWAYS remain 

vigilant and report any early signs/symptoms promptly. 



CRL) 

What is the treatment for BCRL? 

Although the damage to the lymphatic drainage system cannot be reversed, the 

swelling can be reduced and controlled effectively, especially if treatment is started as 

soon as it becomes noticeable. The treatment programme is made up of a number of 

physical therapies. These include the following: 

SKIN CARE CELLULITIS EXERCISE 

Keeping the skin well moisturised 

and in good condition is an 

important part of managing 

lymphoedema and can help 

prevent infection (cellulitis) 

from developing. It is important, 

therefore, that you: 

• Wash the skin each day 

• Try to avoid scratches, cuts 

or bites 

• Take care when cutting nails. 

Don’t pull back the cuticles. 

• Avoid direct sunlight 

• Use an electric shaver rather 

than a wet shaver 

An infection usually caused by 

bacteria entering the skin through 

a cut or break in the skin. It is 

characterised by general ’flu’-like 

symptoms (with or without nausea 

and vomiting), inflammation of the 

skin (redness), swelling and heat in 

the area of lymphoedema which 

then becomes painful and tender. 

If cellulitis does occur, it is vital that 

you contact your GP as soon as 

possible. Prompt intervention with 

appropriate antibiotics for at least 2 

weeks is required. 

Appropriate exercise and relaxation 

play a very important role in 

keeping healthy, regulating body 

weight and also in keeping your 

lymphoedema under control. 

Exercise also helps to maintain 

good posture and balance and to 

keep joints/muscles as flexible as 

possible. Swimming, Pilates, Yoga 

and T’ai Chi are beneficial forms 

of controlled exercise that will 

help not only your arm, but also 

your physical well-being. Exercise 

is vital - but has to be introduced 

gradually. 

HEALTHY EATING 

A healthy eating programme 

should also be followed to help 

ensure your Body Mass Index 

(BMI) is kept within normal limits. 

Research has demonstrated that 

breast cancer survivors with a 

high BMI are more susceptible 

to lymphoedema so adopting 

a healthy eating regimen 

(following the NHS guidelines) is 

recommended. 

If you are experiencing problems 

with your body weight, ask to be 

referred to a dietician for specific 

help/advice. 

MANUAL LYMPHATIC 

DRAINAGE (MLD) 

MLD is a gentle and specialised 

form of skin massage, carried 

out by fully trained practitioners. 

It consists of light, rhythmical, 

pumping hand movements to 

stretch the skin and to encourage 

lymph fluid to drain. The aim 

of MLD is to help stimulate and 

improve normal drainage in healthy 

areas of the body so that fluid can 

drain away from swollen/congested 

areas much more easily. MLD can 

also help to reduce pain/discomfort 

as well as improve the hard, firm 

tissues that can be problematic in 

advanced lymphoedema. 

COMPRESSION THERAPY 

compression therapy depends 

upon the severity, extent and 

nature of the swelling. 

In severe cases, for example when 

your arm is very large or uneven 

in shape, a course of compression 

bandaging may be advised. 

For arms that are less swollen 

and have retained their normal 

shape, an elastic compression 

sleeve/garment may be advised. 

These are medical, graduated 

compression garments, especially 

designed to help reduce your 

swelling and keep it under 

control. 

National charity Lymphoedema Support Network (LSN) 

has advice and helpful information - set up by patients 

to help patients. 

www.lymphoedema.org 

Denise Hardy - Nurse Consultant (KLC), 

BJN Chronic Oedema Nurse of the Year 2019 



Lesley 

Stephen 

@Lesleyc 

Stephen 

My life of medical 

treatment, tests and trials 

I’m a 53 year old mother of 

4 children living in Edinburgh. 

In early 2014 I was working as a freelance 

communications consultant, feeling rather 

stressed with all the plates I had to keep 

spinning. I had a cough that wouldn’t go 

away and at times felt very short of breath. 

I finally made time to visit my GP, assuming 

I had a nasty chest infection. The chest xray 

showed up lesions on my lungs and that’s 

when I started to worry. 

An urgent CT scan and further tests 

revealed that I had stage 4 Her2+ breast 

cancer which had already spread to my 

liver, lungs and bones. I was “incurable 

but treatable” and my life expectancy was 

now measured in months not years. The 

consultant had a rather weary hangdog 

expression when he broke the news; the 

nurse was in tears and held my hand across 

the table. 

The primary tumours in my breast couldn’t 

be seen or felt – I hadn’t ‘missed’ anything, 

just been extremely unlucky. I used to joke 

that my cancer had moved faster than Usain 

Bolt on a good day, but really the shock at 

being told, out of the blue, that you have 

incurable cancer and that you wont see your 

children grow up is unimaginable. 

Life became dominated by medical 

appointments, scans and tests. My first year 

of treatment was spent enduring 12 cycles 

of brutal chemotherapy. It made a good 

job of reducing the cancer to a few small 

dark places in my lungs and I stayed on a 

maintenance drug called Herceptin. 

The following year whilst being scanned for 

a clinical trial three small brain mets were 

discovered. I had Whole Brain Radiotherapy 

which has left me with long term memory 

problems but the brain mets disappeared, 

and luckily they have stayed away. I went 

onto a new oral chemo, Capecitabine, which 

didn’t work. 

I then self funded a drug called Kadcyla 

which wasn’t available in Scotland, but that 

also didn’t work. At that point my consultant 

warned us to ‘get my affairs in order”, and I 

went with the family to New York for what 

I thought would be a last holiday together 

because I was out of standard options. 

I had always asked my consultant about 

clinical trials, and on my return from New 

York, to my surprise he offered me either 

chemo or the last place on a small Phase 1 

trial in Glasgow. I had nothing to lose and 

chose the latter – that was 3.5 years ago 

and I am still on that miracle trial, with a 

very good quality of life. 

I could go on forever about what cancer 

has taken from me – my work; my hair 

(twice); my confidence; my friends; my 

immune system; and most of all, my future. 

I will be on treatment for the rest of my 

life, and live in three month gulps of time, 

cramming ‘family memories’ into the 

anxious times between scans while I’m 

still well. 



Basic Discovery Breast 

Cancer Research 

Rob Clarke, Professor of Breast Biology 

and Director of Manchester Breast Centre 

Basic research has 2 basic aims: 

1 

To make discoveries about the origins 

of breast cancer, to understand normal 

development of the breast, its regulation 

by hormones and the effects of an 

individual’s genetic makeup; 

2 

To discover the factors regulating breast 

cancer growth and its spread during 

metastasis to improve current therapies. 

For example, current research is helping 

identify who is at risk of breast cancer by 

the discovery of multiple genes conferring 

small increases in risk. When these genes 

are analysed in their hundreds, they are 

powerful predictors and enable stratification 

of who may develop breast cancer and who 

is at very little risk of doing so. This will 

enable better screening for early detection 

targeted to those at risk and in addition, 

new treatments for at risk women will be 

introduced to prevent the development of 

breast cancer. 

Discoveries of changes in the mutated genes 

that drive breast cancers during treatments 

and after metastatic spread will enable us to 

personalise treatments to individual patients. 

There is also a push to understand the 

factors that promote metastatic spread to 

different sites in the body. 

Understanding the ‘microenvironment’ of 

each tissue site and how breast cancer 

interacts and communicates with the tissue 

will enable treatments that prevent and treat 

secondary breast cancer in these new sites. 

Both these strands of research will lead to 

many new trials in patients in order to rapidly 

translate research discoveries to the clinic. 



JULIA 

BRADFORD 

@jlizb8700 

I’m not a cancer victim or an inspiration. 

I got sick and survived treatment. 

I AM a sister, aunt, godmother, daughter 

and friend. I’m a fifty something film lover, 

enthusiastic volunteer and job seeker. A red 

lipstick hoarder, lover of bad jokes, charity 

shop clothes and chocolate. 

The year I was diagnosed (2012) was 

an eventful year mainly focused on my 

epilepsy. Medication kept it under control 

until it wasn’t. Breakthrough seizures are 

overwhelming so I didn’t really notice the 

problems in my breast. Finally I saw my GP 

and was referred to hospital. 

Even so I wasn’t worried. I’d been a breast 

clinic patient before. I’d even had a breast 

biopsy. It hadn’t been cancer then so why 

now? 

This time from the first appointment, my 

surgeon prepared me for the worst. She was 

concerned so I had the biopsy the same 

afternoon. 

My mum came with me to get the results. 

She tried hard to reassure us both. But I 

watched as the breast care nurse walked into 

the consultant’s office and then my name 

was called… 

I had surgery, chemo and radiotherapy. The 

surgery showed the cancer had spread out 

to my lymph nodes. Chemotherapy was then 

a certainty. I also had extra scans to see if the 

cancer had spread further. 

I can’t sugar coat chemo, it was tough 

at times. Midway through I developed 

pneumonia and that meant a long hospital 

stay. Huge quantities of antibiotics and the 

skills of my medical team saved my life. 

When I was well enough, I had to grit my 

teeth to start chemo again. The fear of being 

ill plus the side effects were overwhelming. 

Sheer relief had me crying all the way 

through the final treatment. 

Radiotherapy by comparison, despite skin 

breaks and soreness, was easier. However, 

I immediately developed breast and arm 

Lymphoedema because of the radiotherapy. 

Coming to terms with that was very hard. 

The NHS gets much right but it’s not perfect 

in it’s performance of ordinary every day 

miracles. A vast army of people treated me, 

I will just say thank you. I never want to see 

them again. 

I have so many friends now who’ve had 

treatment and many who live with cancer. I’m 

grateful for the women I know, I’m fearful for 

the ones who can’t get the treatment they 

need. It’s not over when it’s over. 

Last year I was discharged from the breast 

clinic. It felt good. I’ll still see my oncologist 

for a while because I took part in a 

radiotherapy trial. 

I’m a pessimistic optimist. The risk of cancer 

coming back remains and I worry about it 

but that’s normal. More than anything it feels 

as if things are coming full circle. 

In 2012, I was having seizures AND I 

had cancer. Now my epilepsy might 

be in remission and so far my cancer 

hasn’t returned. I’ll take it, good 

days and bad days, for as long as it 

lasts. 



CLINICAL TRIALS 

Clinical trials are designed to test new treatment 

approaches, usually against the current standard of 

care. In breast cancer trials maybe of new drugs or 

radiotherapy or surgical interventions but can also 

look at quality of life and survivorship interventions 

such as exercise, diet or complimentary therapies. 

The principles of clinical trial design remain the 

same, whatever is being tested. Most importantly 

trials should have had both scientific and ethical 

review to make sure the design is appropriate and 

participants’ health and rights are protected. There 

are multiple different trial designs. In some trials all 

participants receive the new treatment, eg when a 

drug is tested in humans for the first time. 

In later stage trials a treatment will often be tested 

against the standard of care in a ‘randomised controlled 

trial’. Randomisation is the process of assigning 

an individual to either the new or standard 

treatment and can’t be influenced by your team, it 

is determined automatically by a computer. This is 

very important as it prevents bias. 

If you are invited to take part in a trial the first step 

is to discuss the trial with your clinical team and to 

be given a Participant Information Sheet (PIS). This 

provides a detailed summary of what will happen to 

you if you decide to enter the study. If you would 

like to enter the study then you will need to sign an 

Informed Consent Form (ICF) and then enter a period 

known as ‘screening’. This may be very short 

but can take 2-4 weeks if additional scans or tests 

are required. It is only after the screening tests are 

performed that your entry into the trial can be confirmed. 

Once in the trial, if you change your mind 

and decide that you wish to leave, this is not a problem. 

Let the trial team know and you can withdraw 

without this influencing your care. 

Sacha J Howell FRCP PhD 

Senior Lecturer and Honorary Consultant in Medical Oncology 

Division of Cancer Sciences 

Faculty of Biology, Medicine and Health 

The University of Manchester 

Oglesby Cancer Research Centre 

Manchester, United Kingdom, 

M20 4GJ 

More details on clinical trials can be 

found at Cancer Research UK 

www.cancerresearchuk.org/ 

about-cancer/find-a-clinical-trial 



FUNDRAISING 

Each year we provide our successful abcd 

exercise retreats. 

£600 helps support someone on this 2-night, 3-day residential 

retreat. We offer this unique experience, which provides 

professional support and encouragement during physical 

activity. Some patients go on to do their own fundraising to 

give back and support others attending the weekend. 

No fundraising 

idea is a bad 

one - get in 

touch with all 

your ideas. 

Any support 

is valued by 

everyone. 

£600 

Supports one 

person on a 3 day 

ABCD retreat 

We are grateful for ANY donation received as it helps to support patients in addition to the 

grants that we apply for. Feel free to talk to me about any ideas you have. 

Any support is hugely valued by abcd and by the patients who attend. Your fundraising 

helps support people affected by primary and secondary breast cancer. 

The one thing we want is for you to have fun whatever you do 

gofundme.com/breast-cancer-exercise-retreat 

METUP UK 

A new advocacy group for people living with secondary breast cancer 

metupuk@abcdiagnosis.co.uk @metupukor METUPUK 

metupuk.org.uk 



METUPUK Aims and Objectives 

We are a patient advocacy group aiming to turn 

metastatic breast cancer (MBC) into a chronic illness 

and support MBC patients to gain access to the best 

medicines to prolong and improve their quality of life. 

metupuk.org.uk 

We work towards a day when MBC can be cured. 

1. AWARENESS AND EDUCATION 

• MBC is currently incurable. Highlight the harsh reality of MBC which is not well 

reflected in the Pink celebratory marketing of many breast cancer fundraising 

campaigns. 

• Challenge and educate policy makers, charities and government bodies to ensure 

that MBC is a priority for funding, research and innovation. 

• Ensure that MBC is represented on all Trusts or Boards of breast cancer organisations 

(ideally by Patient advocates being included as Trustees or Board Members). 

• Ensure that primary breast cancer patients understand and recognise the symptoms 

of MBC so that they can present for diagnosis and treatment earlier thereby 

improving their QOL and survival prospects. 

2. RESEARCH AND ACCESS TO DRUGS 

• Urge life science companies to increase the number of MBC trials in line with the 

MBC number of patients and recognise the real potential to extend and save their 

lives. 

• Work to make breast cancer trials more accessible to MBC. 

• Lobby regulatory authorities to speed up the drug approval process for new drug 

treatments for MBC. 

• Work, with other organisations, to secure broad patient access to new innovative 

treatment regimes. 

• Capitalise on the Artificial Intelligence revolution and demand that more effort goes 

to collect and analyse specific data and statistics for MBC. Use information to better 

inform treatment decisions. 

3. PATIENT TREATMENT AND CARE 

• Support MBC patients in understanding treatment and lifestyle options and how they 

can live well with MBC. 

• Campaign for an increase in MBC clinical nurse specialists to support UK patients. 

• Disseminate research information to increase awareness to MBC patients. 

metupuk@abcdiagnosis.co.uk @metupukorg METUPUK 



Joanne 

Myatt 

Busy living with mets 

@JoanneMyatt25 

Initially diagnosed with Breast Cancer in 

2006 aged 30, I was on the cusp of my 

career in social work following five years 

at University. 

Writing up case notes and doing visits 

in between chemo sessions, I faced my 

treatment regime as something I simply 

needed to complete. My cancer was 

curable. 

I started Tamoxifen, diligently looked after 

my health and got on with my life, travelled, 

progressed in my career, bought a house 

with my boyfriend and found our best 

friend Murphy dog… Life was sweet and 

I celebrated my 40th birthday in style by 

getting married on a Mexico beach. 

Things were sometimes fast-paced 

and stressful, and I went to my GP with 

symptoms such as low mood, chronic 

indigestion and sporadic sickness. I had 

undergone breast reconstruction in 2009 

and any pains I felt were always explained 

as scar tissue. In 2016, I had some blood 

tests and a scan for possible gallstones. 

The results came on Friday night after work 

with a life changing phone-call. The GP 

wanted to see me immediately. “Extensive 

metastases in liver”, “you need a bone 

scan”, “secondary breast cancer”… I didn’t 

understand what the doctor was saying; I 

didn’t know what “metastases” meant. All 

my mammograms had been clear. This was 

a mistake. 

More scans and blood tests confirmed 

secondary breast cancer in my liver and 

bones. I needed Paclitaxel chemotherapy 

immediately to save my life because my 

liver was beginning to fail. I felt stupid, 

cheated and angry. I had no idea that my 

primary breast cancer could one day, 10 

years later, appear in another part of body 

without warning. 

In the absence of specialist secondary 

support, I read everything and anything 

related to secondary breast cancer. It was 

information overload and made me feel like 

a rabbit in headlights. I was retired from 

the career I had worked so hard for and felt 

that I had lost my identity. I felt so alone, 

despite my amazing army of supporters, 

that I considered taking my own life. 

A significant turning point for me was 

meeting other young women in the same 

situation through Breast Cancer Care. I got 

involved in patient advocacy and learned 

that the NHS hasn’t been collecting data 

consistently across NHS Trusts, which 

means the data that treatment pathways 

and mortality rates are based on cannot 

be accurate. I learned that my experience 

of having no specialist support is prevalent 

across the UK. 

A few months following my own secondary 

diagnosis, one of my best friends, who is 

the same age as me, was also diagnosed 

with Secondary Breast Cancer. This makes 

me suspect that secondary breast cancer 

is more common than the statistics have us 

believe, especially among younger women. 

Today, I am ‘busy living with mets’. 

Combining conventional treatment 

(currently Capecitabine) with a metabolic 

approach is affording me some stability 

and a good quality of life over3.5 years 

after my metastatic diagnosis. 

I take one day at a time. 



@julieo25 

Waking up with the 

memories of a hot, 

sweaty gig... 

JULIE 

OSBORNE 

And then the realisation 

of a sharp, stabbing 

pain. Right side. 

Radiating inwards... 

I must have pulled a muscle, dancing with 

energetic arms. No, I’ve pulled a muscle at 

the gym. And then the dawning that this isn’t 

a pulled muscle. It’s something else. I don’t 

know what, but it doesn’t feel right. I spend 

the weekend prodding and poking myself. 

No- it’s nothing. Yes- it’s something. I can’t 

ignore this. 

A day later I’m with my doctor. Dr Bish 

takes me seriously and although he is not 

sure he can feel anything and I don’t fit the 

profile, he refers me to St George’s Hospital. 

A week later, having done a circuit of the 

unit – fine needle aspiration, ultrasound and 

mammogram, I’m sat in front of Sue, the 

clinical nurse practitioner. She tells me that it 

is cancer so I need to come back tomorrow 

for them to explain what happens next. 

The next day it’s confirmed that I have 

invasive ductal carcinoma. The tumour is 

in an awkward place so my consultant, Mr 

Sharma is surprised that I found it on my 

own. He points skyward and says someone is 

looking after you and I send silent thanks to 

my Mum. 

My treatment plan is straightforward, a 

lumpectomy and sentinel node biopsy. 

Then they’ll decide whether I should have 

radiotherapy and/or chemo. I’ve been given 

some phone numbers of other younger 

women who have also had treatment and 

begin to realise the importance of connecting 

with women who are at a similar stage of life 

to me. I join in the Breast Cancer Care forums 

and visit the Breast Cancer Haven in Fulham. 

I go to the BCC Younger Women’s weekend 

and get involved with campaigns. 

Years later people would think they knew 

me because they’d seen a picture of me in 

their doctor’s surgery. I did what I could to 

get involved in research. I felt I owed that 

to those who had gone before me. I also 

accessed psychological help because there 

was a deep sense of change within me, I saw 

it every day when I looked at my body and I 

wanted to try to work out who I had become. 

The cancer hadn’t spread to my lymph nodes 

so I didn’t need chemo, but because I was 

strongly oestrogen positive they prescribed 

Tamoxifen. Unfortunately, I was one of 

the tiny number of women who develop 

endometrial cancer. Apparently this is a 

more straightforward cancer to treat and the 

benefits of taking Tamoxifen outweigh the 

negatives. Almost two years after treatment 

for this second cancer I’ve reconciled this 

and feel the Tamoxifen did probably offer me 

some protection. 

I’m still under the care of St Georges. I live 

a different life now, small things really 

don’t matter and experiences far outweigh 

material stuff. I am still going to gigs, but 

occasionally I need a nice sit down after all 

that dancing. 



After treatment finishes and you 

are trying to get on with your life, 

it is not unusual to have worries 

about the cancer coming back. Each 

pain or hospital appointment can 

set off a train of fearful thoughts 

and can make you feel anxious. 

This is completely natural and 

understandable. Here are some tips 

to help you cope: 

Ask for information 

Moving away from treatment can be 

difficult and it is important to allow 

yourself time to adjust. It is a challenge to 

find a healthy balance between keeping a 

watchful eye out for potential symptoms 

of recurrence and being able to get on 

with your life without excessive worry 

getting in the way. Ask your health care 

team for information and advice on things 

you should look out for and give yourself a 

plan to keep to. 

Checking myself for 

symptoms 

What do I need to do? 

How often should I do it? 

What am I looking out for? 

How long should it take? 

What should I do if I’m worried about 

symptoms in between clinic visits? 

Take back control 

It may feel like a challenge to take back 

control of some aspects of your life after 

treatment. It could help to make some 

changes to your lifestyle such as adopting 

a healthy diet or increasing your physical 

activity. If you are returning to work, talk 

to your employer about a gradual return. 

Gradually begin to make some plans for 

yourself such as booking a holiday. 

You may want to connect with others 

who have also been affected by breast 

cancer through a support group or online 

forum. Each person’s experience is unique, 

but it can help to hear from others who 

know what it is like. There may be a group 

programme available for people at the end 

of treatment and this can help with finding 

your transition into life as it is now. 

Talk to someone 

Talking about your worries to someone 

who is a good listener or writing worries 

down on paper can make them feel less 

overwhelming. When we hear ourselves 

express our worries out loud, we are more 

able to put them into perspective. We can 

ask ourselves, “Is this a problem that I can 

do something about or an uncertainty that 

may never happen? Am I concentrating 

on fears for the future at the expense of 

enjoying life in the here and now?” 

Talking therapies such as counselling can 

help you to talk through your experience 

to try and make sense of it all. Talking 

to someone you don’t know and in 

confidence can be helpful to understand 

and process feelings as normal responses 

to a difficult situation. Counselling may 

be available through your doctor or local 

cancer support centre. 

Managing Stress 

You cannot remove the stress of cancer 

completely but there are some things that 

you can do to help yourself manage when 

you are feeling stressed: 

• Exercise is an excellent way to reduce 

the impact of stress. It could be any 

physical activity – walking, exercise or 

dance classes, gardening, housework 

etc. Yoga and Nordic Walking have 

specific benefits for breast cancer 

patients. It helps us to use up some of 

that extra adrenaline that comes from 

worrying and helping us to feel calm. 

• Relaxation and breathing exercises 

can help to calm the mind and release 

muscle tension. 

• Doing an activity that you enjoy can 

help you to stay in the present moment 

and enjoy life in the now rather 

than jumping ahead in your mind to 

predicting the future. 

• Complementary therapies can help you 

relax and feel more in control, but make 

sure you are seeing a qualified therapist 

who has experience of treating people 

with cancer. 

Seek help 

If you are finding it a struggle and the 

worry feels overwhelming, don’t suffer 

in silence. If you find yourself constantly 

checking for symptoms or excessively 

asking others for reassurance or from 

searching the internet; if the worry means 

you avoid things or it stops you from 

making plans, then do talk to your GP or 

your health care team about getting some 

help. Don’t let your worries stop you from 

enjoying your life beyond cancer. 

Find out more on the NHS website: 

www.nhs.uk/Conditions/stress-anxietydepression/Pages/low-mood-stress-anxiety.aspx 

Anne Crook 

Psycho-oncology, The Christie 

NHS Foundation Trust 



DUCTAL AND LOBULAR 

breast cancer 

Understand the 

risks and red flags 

Secondary / Metastatic (ductal) Breast Cancer 

Also known as metastatic or advanced breast cancer 

After primary breast cancer be aware of these RED flags* for secondary breast cancer. 

There are 5 main areas that secondary breast cancer can appear. 

BRAIN 

Frequent headaches, vomiting (first thing in 

the am), dizzy, visual disturbance, seizure, 

impaired intellectual function, impaired 

motor skills, mood swings, balance, fatigue. 

Family members and friends may say you 

are not your normal self. 

BONE 

Pain in bones — commonly thigh, arm, 

ribs and back. Can be dull ache or sharp 

shooting pain. Bone pain with no obvious 

cause or trauma. Report any new, unusual 

or increasing pain. 

LUNG 

Sharp pain on breathing in chest and back area, 

non productive cough, fatigue, blood clots can 

also cause shortness of breath. 

LYMPH NODES 

Swelling or lumps and pressure in 

chest/armpit/neck areas, dry cough. 

LIVER 

Bloating, affected appetite, weight 

loss, fatigue, weak, pain near ribs on 

right hand side. 

SPINAL CORD COMPRESSION 

Rare but more common in breast cancer needs URGENT treatment 

Pain or tenderness in middle or top of the back or neck, severe pain in lower back that gets worse 

or doesn’t go away, pain in back that is worse when coughing, sneezing or straining, back pain 

that’s worse at night, numbness, heaviness, a band of pain around the chest or abdomen or pain 

down an arm or leg, changes in sensation, for example pins and needles or electric shock 

sensations. Contact your clinical team ASAP if you have these following symptoms - weakness 

or difficulty using arms or legs, numbness in the area around the back passage (the saddle area), 

not being able to empty the bowel or bladder, problems controlling the bowel or bladder. 

Please visit: abcdiagnosis.co.uk 

Twitter: @abcdiagnosis 

Facebook: facebook.com/abcdiagnosis 

*IF THE RED FLAG PROBLEM PERSISTS MORE THAN 3 WEEKS 

CONTACT YOUR MEDICAL TEAM DIRECTLY 

ABCDiagnosis SBS (Ductal) Red Flags Infographic v9. Produced 24/02/2020. Please check website for latest version - www.abcdiagnosis.co.uk/resources/infographics/ 

Secondary / Metastatic 

(lobular) Breast Cancer 

Also known as metastatic 

or advanced breast cancer 

GYNAECOLOGICAL TISSUE 

Can be vague and not specific but mimic other cancers or common illnesses- 

Abdominal/pelvic pain, uterine/pelvic bleeding, abdominal swelling/bloating and/or a 

sense of fluid in the abdomen, hot flushes, leg swelling, bone pain, shortness of breath. 

BONE 

Pain in bones — commonly thigh, arm, ribs and back. Can be dull ache or sharp 

shooting pain. Bone pain with no obvious cause or trauma. Report any new, unusual or 

increasing pain. 

After primary breast cancer 

be aware of these RED flags* 

for secondary breast cancer. 

There are 3 main areas 

that secondary breast 

cancer can appear. 

*SYMPTOMS CAN MIMIC OTHER 

CANCER SO BE AWARE, 

IF THE RED FLAG PROBLEM PERSISTS 

MORE THAN 3 WEEKS CONTACT 

YOUR MEDICAL TEAM DIRECTLY 

Please visit: abcdiagnosis.co.uk 

Twitter: @abcdiagnosis 

Facebook: facebook.com/abcdiagnosis 

OTHER SYMPTOMS 

LIVER: Bloating, affected 

appetite, weight loss, 

fatigue, weak, pain near 

ribs on right hand side. 

LUNG: Sharp pain on 

breathing in chest and back 

area, non productive cough, 

fatigue, blood clots can also 

cause shortness of breath. 

GASTROINTESTINAL 

Can be vague and not specific but mimic other cancers or common illnesses - 

difficulty swallowing, abdominal pain, symptoms of a bowel obstruction, feeling full 

early when eating, changes to appetite, nausea and/or a sense of fluid in the 

abdomen, leg swelling, bone pain, shortness of breath. 

SPINAL CORD COMPRESSION 

Rare but more common in breast cancer needs URGENT treatment 

Pain or tenderness in middle or top of the back or neck, severe pain in lower back 

that gets worse or doesn’t go away, pain in back that is worse when coughing, 

sneezing or straining, back pain that’s worse at night, numbness, heaviness, a band of 

pain around the chest or abdomen or pain down an arm or leg, changes in sensation, 

for example pins and needles or electric shock sensations. Contact your clinical 

team ASAP if you have these following symptoms - weakness or difficulty using 

arms or legs, numbness in the area around the back passage (the saddle area), not 

being able to empty the bowel or bladder, problems controlling the bowel or bladder. 

BRAIN: Frequent headaches, impaired motor skills, 

vomiting (first thing in the am), dizzy, visual disturbance, 

seizure, impaired intellectual function, mood swings, 

balance, fatigue. Family members and friends may say 

you are not your normal self. 

EYE (very rare): Vision 

changes — especially 

unilateral, swelling, pain. 

Make sure you always tell your doctor that you have a history of Lobular BC in addition to symptoms or take this pdf along to any appointment and 

explain LBC is more common to spread to the bones, GI tract or ovaries. 

ABCDiagnosis SBS (Lobular) Red Flags Infographic v8. Produced 21/11/2019. Please check website for latest version - www.abcdiagnosis.co.uk/resources/infographics/ 



Bonnell 

Sara 

I Googled “breast pain” to see if there was 

“ ” 

any advice on how to manage it, and found 

inflammatory breast cancer on a long list 

of possible causes. I had never heard of 

inflammatory breast cancer. 

I waited a few months to see if the pain 

stopped at different times of my monthly 

cycle - it didn’t, it was constant. Areas of 

skin on my breast were starting to go hard, 

and dimpled, but still there was no lump. 

I didn’t want to be told off for wasting 

my GP’s time so put off going to see her 

because the symptoms seemed so trivial. 

By late March my whole breast was swollen 

and hard with an extensive area of red 

dimpled skin and what looked like insect 

bites, but still no lump. There were also 

swellings in my armpit on the same side, 

but I’d had a sore throat for a few weeks so 

I thought these were just swollen glands. 

By this time it was becoming difficult and 

uncomfortable to wear a bra, so I finally 

made an appointment. 

I will never forget the look of horror on 

my GP’s face when she examined me. She 

immediately suspected cancer and referred 

me urgently to the hospital for tests. 

I was diagnosed with inflammatory breast 

cancer 3 weeks later, aged 46. There was 

no lump, and it didn’t show up clearly on 

@Saraj 

bonnell 

In November 2011 I had pain in my left 

breast - a prickling sensation as if the 

plastic tag from a clothes label had 

fallen into my bra. There was no lump so 

I didn’t think it could be cancer, instead 

I thought it was just the start of the 

menopause although it seemed strange 

that it was only affecting one breast. 

the diagnostic mammogram, but the cancer 

was 80mm by 60mm and had spread to 

the skin and at least 6 of the lymph nodes 

under my arm. 

I was very lucky that my GP referred me so 

quickly, because doctors often misdiagnose 

Inflammatory Breast Cancer as a skin 

disorder and try to treat it with antibiotics, 

only referring patients when the antibiotics 

don’t work. It was Stage 3 - locally 

advanced - which is the earliest stage that 

inflammatory breast cancer can currently be 

detected. 

The cancer was treated with chemotherapy, 

then a modified radical mastectomy where 

the whole breast, all its skin, and all the 

under-arm lymph nodes on the affected 

side were removed. Then I had radiotherapy, 

and a year of Herceptin. 

I had to wait 2 years for my breast 

reconstruction because the risk of 

recurrence and spread is so much higher for 

Inflammatory Breast Cancer. After another 2 

years I then had surgery on my right breast 

to make it match the reconstructed breast’s 

size and shape as closely as possible. 

Currently I am over 7 years ‘No Evidence 

of Disease’, although I’ve had a few scares 

which have so far turned out not to be 

cancer. 



Roger 

Newman MBE 

On return home I immediately contacted 

my doctor who referred me to an 

understanding consultant. They thought 

the lump might be the result of some 

medication I was taking but said that 

some further tests would be the correct 

precaution. 

My first mammogram was done by a lady 

who had never had to deal with a male 

patient before and couldn’t work out the 

best position for my test. The result was 

a no result so I returned for another. A 

biopsy followed which confirmed that it 

was indeed breast cancer. 

I was told that I would need a 

mastectomy and possibly also further 

surgery to remove the lymph nodes 

if the cancer had spread to them, 

which turned out to be the case. The 

Macmillan nurse assigned to me was a 

huge support throughout this process; 

always being available to talk, answer my 

questions and calming me down… 

After the surgery the hospital clearly 

couldn’t decide which ward I should 

be put on and I soon found myself 

surrounded by gruff men with 

orthopaedic conditions. Neither the 

patients nor the staff could get their 

heads around the fact that I was a man 

who had breast cancer. One young nurse 

told me that she didn’t even know that 

men could have the condition. 

Throughout it all my loving and totally 

supportive partner was by my side but 

the ward was so uncomfortable that I 

told him when he visited me not to kiss 

me or give any hint that I was gay… 

“ ”BREAST 

@Roger 

Newman6 

I’m a 78 year old 

gay man. Checking 

myself while I was 

on holiday in 2015, 

I found a lump in 

my right chest, 

close to the nipple. 

After the surgery, I had a course 

of radiotherapy, and after much 

discussion with my partner, I declined 

chemotherapy. 

All the breast cancer charities I have 

been in touch have been warm in their 

concern for me but I am not aware of 

any separate organisation for the 300 

or so men who are diagnosed with the 

condition annually. The male support I 

have received has come from other parts 

of the world. 

Although I am assured that I am 

not the only man locally with breast 

cancer, there has been no offer from 

professionals to bring us together for 

mutual support. I have tried to use social 

media to find others but without success 

and I suspect that being clear about 

my sexuality may have made people 

reluctant to contact me. 

The love and support of my wonderful 

partner is a blessing and we face the 

future together. We agreed right from 

the start that we would concentrate on 

the present. 

Being part of a vibrant gay 

community we have also valued 

the support we have both 

received from our ‘brothers’ and 

‘sisters’. 

CANCER SUPPORT 

The anxiety about the return of the 

cancer will remain but for ‘now’ our aim 

is to enjoy another day together and 

enjoy the love we give and receive from 

each other. 

MEN CAN GET BREAST CANCER TOO 

51 


YOGA 

FOR BREAST CANCER SURVIORS 

AND PATIENTS 

‘Regular exercise benefits everyone but especially women and men recovering from 

breast cancer treatments. Exercise should be easily incorporated into daily life, varied, fun, 

energizing and uplifting and Dr Kwok’s book captures all of these elements.’ 

Ms Fiona MacNeill, Consultant Breast Surgeon, The Royal Marsden NHS Foundation Trust. 

President UK’s Associate of Breast Surgery (2015-2017) 

‘I have seen the benefit that yoga can have for my breast cancer patients and I am delighted 

that Dr Kwok has put together this comprehensive and extremely readable guide. I think 

this will be of enormous help to people recovering from breast cancer.’ 

Dr Mark Harries, Head of Medical Oncology and Consultant Medical Oncologist , Guy’s and 

St Thomas NHS Foundation Trust 

Dr Yoga’s Practice Manual - Endorsed by world leading oncologists and yoga 

teachers. With guided sequences of three levels of difficulties, helping you to 

progress through your breast cancer journey into your recovery. Suitable as a 

tool for a home-based practice for breast cancer patients and survivors. 

The gentle healing yoga flow sequence is specifically designed for breast 

cancer patients recovering from surgery or undergoing active treatments like 

radiotherapy and chemotherapy. The sequence is designed for those who 

want to alleviate the common side effects of these treatments, including 

fatigue, insomnia, muscular pain, lymphedema, anxiety and depression. 

The rejuvenating yoga flow sequence is specifically designed for breast cancer 

patients who have completed all on-going medical treatments and are ready 

for a physically stronger, yet grounded yoga practice. 

The dynamic yoga flow sequence is designed for breast cancer survivors who 

have worked through both the healing and rejuvenating sequences, and who 

are ready for a more dynamic and challenging practice. 

Publication 25/5/17 

ISBN 978-1-911079-45-3 

Price £19.99 

Category Health 

Format 208 X 208mm 

Page extent 314 

Binding Paperback 

Illustrations 200 

Author Residence: London 

Rights Worldwide Exclusive 

BIC CODE: VFMG/ VXH 

Dr Jimmy Kwok is unique in his approach, which mixes medical science and 

ashtanga principles. He bridges both eastern and western philosophies of 

health and currently treats patients and teaches yoga classes. 

He gained his MA in Natural Sciences from the University of Cambridge and 

his doctorate degree in Clinical Oncology (Breast Cancer) at Imperial College. 

Jimmy has also interned at Harvard Medical School and the Oncology 

Department at Great Ormond Street Hospital. He has practised Ashtanga 

yoga for over a decade and he is also a registered Yoga Alliance UK RYT200 

yoga instructor. 

DISTRIBUTED BY GARDNERS 

For more information or a sample copy contact: jimmy.kwok@dryoga.co.uk 



@CurlyCars 

Fund 

Carolyn 

Gammon 

Living with cancer 

through pregnancy and 

the incredible goodwill 

of friends and family 

“ I had my first cycle of chemotherapy in early 

” 

In September 2015 we were delighted to 

discover that I was pregnant with our second 

child. Six weeks later, I noticed some changes 

in my breast and went to see my GP. I was 

referred for an ultrasound/biopsy and we 

were told I had a 5.6cm cancerous tumour 

in my left breast. The consultant said I could 

have chemotherapy to shrink it, which would 

not harm our baby. I would then need surgery 

after the baby was born. 

December and my hair fell out on Christmas 

Day. I had regular scans to check the baby 

and these showed she was growing well. 

I finished chemo in mid-March and our 

daughter was born on 29th April. She was a 

healthy 7lb 5oz and absolutely perfect. We 

decided to call her Mira. 

Our little miracle. 

After Mira was born I had a CT scan, then a 

mastectomy. We dared to believe this was our 

happy ending... Until the CT results showed 

suspicious areas on my liver/lungs. Following 

an MRI, on the 23rd June, my oncologist 

confirmed that I had incurable secondary 

breast cancer. 

The weeks after my diagnosis were awful. We 

grieved for the future we had lost and cried 

when the children were asleep. 

My oncologist suggested I continue with 

Herceptin as planned. Then he delivered yet 

more bad news: the two drugs I would need 

after Herceptin were not available on the NHS 

in Wales. 

When I needed them, I would have to selffund, 

at a cost of approximately £90K per 

year for Kadcyla and £60K per year 

for Perjeta. 

Our family and friends immediately set up 

a crowdfunding page. The response was 

completely overwhelming; within two weeks 

we had raised £20K, within two months, 

£50K, and over the next two years, £195K! 

In June 2017, a year after my secondary 

diagnosis, the Welsh Government announced 

that Kadcyla was to be made available on 

the NHS in Wales. A week later I found two 

small lumps in my left armpit. The usual tests 

confirmed it was cancer. The consultant 

recommended a lumpectomy, so I requested 

a second mastectomy at the same time, and 

he agreed. The new tumours were confirmed 

as HER2+, so it was considered a local 

recurrence and my treatment didn’t change. 

In February 2018, the Government announced 

that Perjeta would “now be routinely available 

on the Welsh NHS for people with advanced 

breast cancer”. A week later my scan results 

showed I had progression in my lungs. Perjeta 

was only available as a first-line treatment, 

which meant I didn’t qualify. It was decided 

that my next drug would be Kadcyla, which 

has kept me stable since. 

It’s over 4 years since my primary diagnosis. 

I am extremely lucky to have been able to 

access revolutionary cancer drugs that allow 

me to continue with a relatively ‘normal’ life. 

Because of them, I am able to focus 

on living with, rather than dying 

from secondary breast cancer. 



Please sign and 

share the petition 

Head to: https://bit.ly/2Gmwylr 

@BreastDensityMatters 

Cheryl 

Cruwys 

Breast density in 

mammograms 

In 2013, we moved to France; my husband had 

retired early, and after 15 years as a French teacher, 

it was time for a change. After turning 50 in 2016, I 

was ready for my first mammogram. I was healthy, 

average weight, never smoked, no family history of 

any cancer, so I had absolutely no concerns. After 

the mammogram, I was asked to go into the next 

room to have an ultrasound. 

Supplemental Ultrasound 

on Dense Breast Tissue 

The doctor/radiologist examined my left breast 

thoroughly with the ultrasound gadget. He didn’t 

seem overly concerned, but he was not smiling 

either. He explained, pointing to the screen, that he 

had discovered a small shadow, ‘maybe nothing 

sinister’ but he wanted to be sure so I needed a 

biopsy. 

Whilst getting dressed I began to shake; I gave 

myself a ‘talking to’ and tried to calm down. 

A long week 

We decided to keep it quiet about the ‘shadow’ on 

my boob; after all it was more than likely a fibrous 

cyst or something? 

The YELLOW PAGES! 

My local doctor had the results. ‘One word – 

“cancerous!”,’ he said. Although I speak perfectly 

good French, I think he wanted to be sure I 

understood. 

Really! I exclaimed (in French). No tears. We talked 

about no family history of any cancer; I had never 

smoked and no, I had not received any accident or 

any ‘trauma’ to my breast/s. 

My doctor picked up the yellow pages telephone 

directory and called the hospital to organise an 

appointment. He reassured me that I was ‘lucky’ as 

I had a ‘good’ cancer, IDC (invasive stage 1) and he 

knew the surgeon who carried out the lumpectomy 

operations. 

Yes, the tumour was only 8mm but had it travelled 

to my lymph glands or elsewhere? I kept it a secret 

from family and friends because I didn’t want them 

to worry. 

Limoges Hospital, France - 21 July 2016 

The following weeks were filled with hospital checks, 

MRIs, CT scan, meetings with the anaesthetist and 

finally the day of the lumpectomy arrived; I was 

positive, happy and returned home by 8pm that 

evening. 

I felt fine, but was told I needed to rest! I sat in the 

garden with my laptop and took the time to do 

some research, which led me to women with ‘dense 

breasts’. 

There had been a UK campaign some years 

previously to raise awareness about breast density 

and the implications of dense breast tissue. I found 

that some women received ‘normal’ mammograms, 

but then were later diagnosed with larger and more 

advanced cancers, due to the dense tissue obscuring 

the cancer in the mammogram image. I felt that not 

only was I lucky but I had to do something… 

I decided to re-launch the Breast Density campaign. 

Breast Density Matters UK was formed. 

An education effort about dense breasts with the 

mission of early detection; reducing later stage 

cancer diagnoses and saving lives. 



PATIENT 

INVOLVEMENT 

IN RESEARCH 

High quality patient and public involvement improves the quality and relevance of research. 

Including patients in research ensures the information about the research is appropriate 

and accessible, but also that the research methods are acceptable and sensitive. 

Not only does involving patients in research empower patients and carers, providing a 

route to influencing change, but it also ensures accountability 

for public or charity funding. 

Finally, patient involvement in research can also identify 

new research questions, changing the research’s direction 

and allowing it to better serve the needs of those affected 

by cancer. 

Claire Dickinson 

Cancer Research UK 

Senior Nurse, Manchester 

Why USE 

evidence 

based 

research? 

For most, a cancer diagnosis is usually comes 

with many emotions, perhaps strongest 

among them is fear; fear for loved ones and 

fear for the future. As the first waves of fear 

retreat, we can try to absorb the array of 

information around us, from our healthcare 

team, friends and family, the internet 

and social media. But who to trust, what 

information will really help? 

Modern treatments used in our hospitals are built upon decades of research. Cancer cells are 

ultimately only different from the rest of the cells that make us in that genetic mistakes (mutations) 

make them behave differently and grow where they shouldn’t. With such similarities it 

hard to find ways of killing these cells while preserving the rest of the “good” ones. That might 

perhaps explain why we need to rely on evidence to guide decisions about treatment. Research 

builds that evidence but understanding and using it takes many years of special training from 

people working in teams. 

While there is much still to be learned, that research approach is driving 

dramatic improvements in outcome. Until the 1950s, unless a cancer 

was found in a single, easy to remove body location it was always 

fatal. Today, for every 10 cases of invasive cancer diagnosed, 6 of those 

people will be alive 5 years later, most of them will effectively be cured 

- living a decade more or longer. Importantly, those numbers continue 

to rise year by year. 

So working with the evidence-based 

approaches of your medical team is 

clearly the best way to stack the odds 

of a good outcome in YOUR favour and 

remember outside of that if something 

sounds too good to be true, it usually is! 

Robert O’Connor Ph.D. 

Head of Research 

Irish Cancer Society 



@Madame 

Fierce 

EMMA 

WILLIS 

Standing in the shower before 

work on a September morning, 

my hand brushed against 

a lump. I had just spent the 

summer in Ireland with my 

mum, who had been diagnosed 

with breast cancer five months 

previously and was recovering 

from her own treatment. It 

couldn’t be... could it? I had only 

just turned thirty… 

Two weeks later, despite the statistics being 

in my favour, I was diagnosed with ER+, 

HER2+ breast cancer in my right breast. I had 

to tell my family, throwing them back into 

the alien, unfamiliar world that we had just 

clawed out of. 

I desperately wanted to cling onto normality 

and maintain my grasp on who I had 

always been, so I insisted that my family 

and friends put up with my dark humour; 

we were going to navigate this storm with 

laughter, no matter what. I also went back 

to my job as a high school English teacher 

for two weeks prior to my lumpectomy and 

reduction, determined to immerse myself in 

my classroom. Clasping onto normality for as 

long as possible was vital. 

After my surgery I had clear margins 

around my tumour site and my six rounds 

of chemo went as smoothly as I could have 

hoped. Occasionally my bloods would be 

low, meaning treatment was delayed for a 

week, but normally I felt grateful just to have 

another week of feeling healthy before being 

flung into the cycle of chemo side effects 

again. 

Dealing with cancer made me reach deep 

inside myself and find the strongest version 

of me... and I had so much to be grateful 

for. I was grateful for the endless love from 

my family and friends; I was grateful for 

the incredible support network I’d found 

on social media (#BCCWW on Twitter and 

YBCN on Facebook); I was grateful for 

having time off work and the opportunity 

to realise that there was life beyond my 

classroom walls. 

I read a lot of books, watched a lot of 

boxsets (although choosing Mad Men with 

the women’s glorious hairstyles while I myself 

was bald from chemo was perhaps a tad 

sadistic!) and went on as many day trips and 

weekends away as my body would allow. 

Moving forward from cancer has probably 

been the bigger challenge. Throughout 

treatment you always have that next step 

to grab onto and you are surrounded by 

staff whose reassurance and understanding 

validate every emotion and question you 

have. After treatment ended I felt adrift. 

Although I loved returning to work, I felt 

immensely alone without others who could 

directly relate to my experiences. 

Currently, I’m still taking Tamoxifen and 

grateful that I don’t have any noticeable side 

effects from it. 

As time goes on, I’m feeling less 

defined by my cancer experience, 

although I know I will never live 

without the fear of recurrence. 

Practising daily mindfulness and focusing 

on the present helps calm my anxiety and 

loosens the grip that cancer holds over me. 



Living with 

Cancer after 

treatment 

Living with Cancer after your treatment and being 

told, ‘The treatment has been a great success,’ 

should be the best news you get, but sometimes 

it can actually be the most frightening part of the 

journey. For the last months since being diagnosed 

you have been going to chemotherapy, radiotherapy 

and lots of hospital appointment. You may have 

needed surgery and lots of recovery time. Now, there 

is nothing apart from the six-monthly appointment! 

Questions that may come to mind: 

What do I do? Need to get back to work? Am 

I ready? Need to get back to normality! Who 

will help me do this? And the big one; 

“WILL IT 

COME BACK?” 

THE UNCERTAINTY IS THE HARDEST PART OF YOUR JOURNEY. 

You’re likely to feel relieved that your treatment is finished, and 

keen to get back to the life you had before cancer. You may 

also be thinking about making the most of your health, or about 

positive changes you can make to the way you live. The end of 

treatment may present you with changes and new challenges. 

You may hear the term ‘Cancer Survivor’, or perhaps see it 

written in some information. The term ‘survivor’ includes anyone 

who is living with or after cancer. There may still be some 

physical problems, such as the side effects of treatment, or 

emotional and practical problems. 

You now have the chance to look at how you want to live in the 

future. You may want to do things you’ve often thought about 

but never done, perhaps visit places you’ve always dreamed 

about, or enrich personal relationships. This can be exciting, but 

we understand that you may not feel quite so confident. 

Uncertainty is so frightening, but you need to teach your mind 

to remain positive and think about the good things that are in 

front of you. 

YOU 

ARE NOT 

ALONE 

Don’t bottle it up... 



WHAT OTHER 

SERVICES YOU MAY 

NEED TO ACCESS 

Suffering from cancer may lead to 

various difficulties and the following 

services aim to support you with the 

rest of the multi -disciplinary team from 

diagnosis through treatment and at 

follow up in to survivorship. 

The Role of the Dietitian 

in Cancer Care 

Food and eating are an enjoyable and 

social part of everyday life. Nutrition is the 

process of nourishing or being nourished 

and is essential for living. Cancer and its 

treatment can affect your appetite or 

ability to eat your usual meals. 

Assess your nutritional needs and gain 

an understanding of your lifestyle, food 

preferences and eating pattern. 

Use the knowledge of nutrition, health, 

disease, cancer and its treatment to 

provide practical advice that will help you 

to eat and maintain your quality of life. 

Support you in making informed choices 

regarding healthy lifestyles. 

The Role of the 

Physiotherapist in Cancer Care 

Physiotherapy is an autonomous profession concerned 

with the care, management and rehabilitation of 

patients. These principles apply to the management of 

patients with cancer through all care and rehabilitation 

programmes from diagnosis to the end of life. 

Physiotherapists conduct ongoing assessment of the 

needs of this patient group and their carers, in order to 

apply skilled interventions, which are vital for patients’ 

independence, functional capacity and quality of life. 

The role of the physiotherapist, as an essential member 

of the multi-disciplinary team is key to the successful 

rehabilitation and management of patients with cancer 

and palliative care needs. The absence of physiotherapy 

intervention would be detrimental to patient care and the 

ability of the patient’s family to cope with the effects of 

the disease or its treatment on their functional capacity 

and quality of life. 

THE ROLE OF EXERCISE 

Exercise is a huge part of my physical and 

mental wellbeing and I want to share this 

message. It’s helped me gain strength and 

muscle tone as this can deteriorate through 

illness due to lack of movement. If you can 

exercise around treatment you will feel the 

benefits. I have also felt it has helped reduce 

the side effects caused by chemotherapy, 

radiotherapy and daily medication. 

I continued exercising throughout all my 

treatment over the last 5 years. There is 

evidence that for primary survivors it can help 

reduce the risk of secondary cancer. 

My website supports this and I have links to 

what is available across the country. 





Charities who give 

holiday grants or support for breaks 

Abcd retreats for exercise 

Motivational exercise 2 night retreats 

with other patients sharing the 

experience. 

www.abcdiagnosis.co.uk/lifestyle/ 

abcd-retreat/ 

Casting for Recovery 

Fly fishing retreats based on the 

principle that the therapeutic 

benefits of the countryside 

alongside the connection with 

others who have shared a similar 

experience can be transformative. 

www.countryside-alliance.org/ 

charity/casting-for-recovery-ukireland/apply-for-a-retreat 

Ellie’s Friends 

Free gifts and services for anyone 

living with cancer in the UK. 

www.elliesfriends.org 

FACT – Frederick Andrew 

Convalescent Trust 

Providing grants for working 

WOMEN from all backgrounds and 

almost any medical condition – there 

is an assessment form you complete 

for a grant. 

www.factonline.co.uk 

Something To Look 

Forward To 

A comprehensive website where 

people with cancer and their families 

can access a variety of free stuff for 

cancer patients. 

www.somethingtolookforwardto. 

org.uk 

Search online for 

more cancer charities 

Shine Cancer Support 

Supporting younger cancer 

patients 20s,30s, 40s in person 

or online but provide a range 

of activities or breaks to meet 

other people 

www.shinecancersupport.org 

Team Verrico 

Charity mainly supporting 

families, a standout being the 

camp out in the summer months 

and a range of activities. 

www.teamverrico.org 

Odyssey 

A 5 day “adventure” course through 

unique blend of the unexpected and 

a variety of challenges with fun. 

www.odyssey.org.uk 

Macmillan 

Offer a range of grants you 

can apply for so ask for more 

information. 

www.macmillan.org.uk 

Willow Foundation 

Provides special days for the 

seriously ill 16-40 year olds. 

www.willowfoundation.org.uk 



Natalie 

Yates-Bolton 

Breast cancer recurrence 

One of my favourite numbers 

is the number 5 and coincidentally 

I have had cancer 

five times. 

@NYatesBolton 

As a 22 year old university student in 1989, I 

was unprepared for a diagnosis of cancer. I 

had to quickly make a decision about whether 

to stay at university 250 miles from home or 

return home to be looked after by my Mum. 

I knew that I wanted to graduate with my 

friends, so I decided to stay at university. 

I was on the clinical placement year of a 

nursing degree with a mandatory number 

of hours that needed to be completed, 

regardless of having cancer. With the support 

of my close friends and compassionate tutors 

I carried on. 

Each morning I would put on my uniform and 

go to the hospital to care for patients. At the 

end of my shift I would hop on the hospital 

transport to the cancer department the other 

side of town. I’d have my radiotherapy, get the 

little bus back to the nurses’ accommodation, 

have a rest for an hour and then carry on with 

life as normal. 

I did get tired, my skin was red raw with 

radiation burns and my hair fell out in the 

pattern of the lead protector for my brain 

and spinal cord. However, with wrap around 

compassion and friendship I completed my 

treatment, my clinical year, and graduated 

with the wonderful friends who had looked 

after me. 

In 2003 I was diagnosed with Hodgkin’s 

lymphoma again but now I was mum to India 

(9) and step-mum to Lucy (13). 

I decided to be a stay at home mum for 10 

months, balancing my time between having 

chemotherapy, resting after treatment and 

saving my best energy for family time. 

In 2009 I was diagnosed with breast cancer, 

probably caused by the radiotherapy from my 

first cancer. This time the extensive nature of 

the surgery, chemotherapy and radiotherapy 

meant that I needed to have 9 months off 

work. I could still function well as a mum/ 

step-mum; to have worked as well would have 

meant that neither family life nor work life 

would have had successful outcomes. 

In 2011 I had a breast cancer recurrence, the 

girls were older, my surgery was less extensive 

and a supportive boss at the university 

where I work meant that I could juggle family, 

treatment and work. I hope that one day I 

can offer the same support to someone so 

that they can live a fulfilling life despite life’s 

challenges. 

Now in 2017, since my last diagnosis 

which means I now need ongoing 

targeted chemotherapy, I have 

applied the lessons from my previous 

experiences and am currently 

working as a senior lecturer in 

nursing, a job that I value. 

I work in this role four days a week and also 

work as a consultant for a fabulous dementia 

care company. My daughters are now 25 and 

29 years old and being with them is still my 

favourite way of spending time. 



Cottington 

@Cotting 

tonN 

Nicola 

I live with my wife and two sons in beautiful 

“ ” 

rural Suffolk. I am a senior manager for 

the NHS and at the time of my diagnosis I 

had just taken a job with responsibility for 

cancer services, which added an interesting 

dimension to my journey. 

The GP couldn’t feel what I was talking 

about but referred me to the breast clinic 

at the local hospital to be sure. I had a 

mammogram which was “all clear” and 

then an ultrasound, which did show some 

areas of concern, and then a biopsy. I was 

told that I was quite young and had dense 

breasts, which meant that the mammogram 

may not be accurate. I was asked to return 

about ten days later for the results of the 

biopsy. The doctor suggested I bring my 

wife with me. 

I actually think those ten days were the 

hardest part of the last two years. The 

not-knowing was so difficult. After that, I 

always felt I had something to focus on, I 

always had a plan. 

When we were called into the consultation 

room I knew something was wrong because 

there was a specialist nurse there. So 

it wasn’t a complete shock when I was 

diagnosed with invasive ductal carcinoma 

in my right breast, oestrogen receptor 

positive. They already had a treatment 

plan. It had been detected early so I would 

I was 41 when I found a lump in my right 

breast in July 2016, three weeks after 

starting my new job. I decided to see if 

it settled down after my period came 

as I have always had lumpy boobs. We 

also had a family holiday booked. So, 

my period came, and we had a lovely 

holiday, but the lump was still there. 

have a wide local excision, followed by 

radiotherapy. However, an MRI a week later 

showed that there were multiple tumours, 

covering most of my right breast so the 

plan changed and I needed to have a right 

side mastectomy. 

I had a mastectomy and an immediate DIEP 

reconstruction, using my tummy fat. I was in 

theatre for eight hours and in hospital for a 

week. I felt mentally positive but physically 

I have never felt so debilitated. It was hard 

work to get out of bed and walk around and 

I slept a lot. 

I didn’t need any radiotherapy or 

chemotherapy. I started taking tamoxifen 

in November 2016 but had to stop taking 

it after eighteen months because it caused 

thickening of my womb lining and excessive 

bleeding. 

After a five month break, I am now about 

to start gosrelin injections and will have my 

ovaries removed. I am cross that I am facing 

an imposed menopause ten years early. But 

continuing hormone suppression increases 

my ten-year survival rate by five percent. 

I remember at an early oncology 

appointment asking about twenty- and 

thirty-year survival rates – I felt so young 

and wanted to live longer than ten years! 

But that data just isn’t available. 




NHS 

Breast Cancer Screening 

For information and guidance about 

breast cancer screening, talking you 

through the process, and giving 

answered to all the frequently asked 

questions. 

www.nhs.uk/conditions/ 

breast-cancer-screening 

Cancer Research UK 

We are the world’s largest charity 

dedicated to saving lives through 

research. Our vision is to bring 

forward the day when all cancers 

are cured. 

www.cancerresearchuk.org 

Breast Cancer Now 

We are Breast Cancer Now, the 

UK’s largest breast cancer charity, 

formed by the merger of Breast 

Cancer Care and Breast Cancer 

Now. Our research and care 

provide support today and hope 

for the future. We are fundraisers, 

campaigners, researchers, 

believers. 

www.breastcancernow.org 

Make 2nds Count 

Make 2nds Count is dedicated to 

making women and men living with 

secondary breast cancer count. 

www.make2ndscount.co.uk 

The Lymphoedema 

Support Network 

The Lymphoedema Support 

Network (LSN) takes the lead 

role in educating and supporting 

other patients with this condition 

by providing a high standard of 

information and promoting self-help. 

www.lymphoedema.org 

Lobular Breast Cancer 

Alliance (LBCA) 

The LBCA is a national network of 

patient-advocates with lobular breast 

cancer working with breast cancer 

researchers and clinicians. LBCA 

advocates for ILC research and 

educates about lobular breast disease. 

www.lobularbreastcancer.org 

MET UP UK 

A new advocacy group for people 

living with secondary breast cancer. 

@metupukorg 

Prevent Breast Cancer 

We are the only UK breast cancer 

charity funding ground-breaking 

research solely aimed at preventing 

the disease for future generations. 

www.preventbreastcancer.org.uk 

Secondary 1st 

The mission of Secondary 1st is 

to help fund research into the 

prevention, diagnosis and causes 

of secondary (metastatic) breast 

cancer and the development of more 

effective treatments. 

www.secondary1st.org.uk 

Macmillan 

METUPUK 

We provide physical, financial and 

emotional support to help you live 

life as fully as you can. 

www.macmillan.org.uk 

Maggie’s 

Maggie’s helps anyone affected 

by cancer so you can talk to 

and get support from a range 

of professionals across 22 

centres. 

www.maggiescentres.org 

Second Hope 

Our mission - to provide hope and 

strength by raising awareness, 

providing support and funding 

research. 

www.secondhope.co.uk 

Dense Breast 

DenseBreast-info.org was 

developed as a comprehensive, 

medically-sourced educational 

tool. Our mission is to 

objectively inform “dense breast” 

conversations occurring as a 

result of advocacy efforts. 

eu.densebreast-info.org 



“I am extremely lucky 

to have been able to 

access revolutionary 

cancer drugs” 

“I am able to focus on 

living with, rather than 

dying from secondary 

breast cancer.” 

jo@abcdiagnosis.co.uk 

@abcdiagnosis 

facebook.com/abcdiagnosis 

gofundme.com/breast-cancer-exercise-retreat 

Thank you to to our our book sponsor Flen CLINIGEN. Health. 

Flen Clinigen Health has have no had input no into input the in content the content of the of book. this book. 

Registered CIC.

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