14 August 2017

Charity warns women are being left out in the cold when hospital treatment finishes

More than a quarter (26%) of women diagnosed with breast cancer say their hospital treatment ending was harder than having a breast removed or going through treatment like chemotherapy or radiotherapy, according to new findings from Breast Cancer Care.

Shockingly, only one in 10 (10%) say they felt positive and ready to move on when they were discharged from hospital treatment. And, of the over 800 women surveyed by Breast Cancer Care, more than half (53%) struggled with anxiety at the end of treatment and nearly a third (31%) with depression.

Yet almost half (42%) of those surveyed were not told by their healthcare team how to access information and support once hospital treatment ended.

Breast Cancer Care is warning women with breast cancer are being left out in the cold at this crucial time in their recovery. To reach more women at this point, the charity has launched a new app, BECCA, which offers women instant access to support from the moment they finish treatment for as long as they need it1.

The survey found three of the toughest issues women face at the end of treatment are:

80% fear their cancer coming back
79% struggle with fatigue
1 in 2 (52%) struggle with a lack of body confidence

Katie Akerman, 46, from Chichester, was diagnosed with breast cancer in 2014 when her youngest child was just seven months old. She struggled with anxiety after treatment:

“After attending hospital on a weekly basis for treatment, once it’s finished you’re just sent on your way and it feels like nobody is looking out for you anymore. Even family find it hard to understand that, for you, cancer is not over.

“I couldn’t put a name to it but I just felt panic-stricken. It was extreme over-reaction to things going on around me. I’d worry about my family getting killed in a car crash, or my young son choking in the night. I’d been overseas a lot for work, but suddenly I couldn’t breathe at the thought of getting on a train to London. My anxiety was controlling me and I didn’t have anywhere to turn.

“There needs to be more out there to help women understand what they’re going through and cope with the aftermath of cancer.”

David Crosby, Director of Services and Engagement at Breast Cancer Care, says:

“These shocking figures show that, for the majority of women, breast cancer doesn’t stop when hospital treatment ends. Getting back to ‘normal’ can feel like a huge mountain to climb, and many find that leaving hospital after their last appointment is the hardest moment of all.

“Around 691,000 people are alive in the UK after a diagnosis of breast cancer, and the numbers are only set to rise2. Those who have faced breast cancer have already been through enough, and should not be left to cope alone with ongoing mental health issues, debilitating physical side effects and constant fear of what lies ahead.

“The NHS must ensure every breast cancer patient has access to support once their hospital treatment ends. Despite commitments to make this happen, there has been worryingly little progress to turn this promise into reality.3

To download the new BECCA app, visit the App Store, Google Play or breastcancercare.org.uk/becca

- Ends-

For further information, please contact:

Laura MacLeman, Breast Cancer Care

020 7960 3423 (out of hours 07702 901 334)

laura.macleman@breastcancercare.org.uk

 

Notes to editors

Figures from a Breast Cancer Care survey. Fieldwork was undertaken online between 13 April and 31 May 2017. Total sample size: 804 women, all of whom have had a primary diagnosis of breast cancer.

Total sample size for individual questions may vary due to women answering specific questions according to their personal experience.

Percentages have been rounded to the nearest whole number. For exact figures and full findings please contact Laura MacLeman.

1) Through BECCA, bitesize tips are delivered daily to users as a deck of cards, letting them flick through ideas on topics like exercise, diet, hobbies and mental wellbeing whenever they want. They can then favourite the cards they are interested in and use these to support them in taking small steps towards approaching life after breast cancer with confidence.

2) The Rich Picture with Cancer, Macmillan Cancer Support, 2014

3) https://www.england.nhs.uk/wp-content/uploads/2016/05/cancer-strategy.pdf

 

Additional case study quotes

Rachel Bruce, 47, from York finished her treatment four years ago in 2013. She still struggles with chronic fatigue. She is married and has four children (aged 20, 18, 15 and 13)

“I had the normal fatigue you have through treatment, and had a couple of months away from my job as a primary school teacher to build myself back up. But about a year later I got a cold and it really knocked me back, and I ended up off work for four months. Every time I’ve had a cold or infection since it has knocked me back again.

“It took a long time and a lot of energy to get the help I needed. I kept getting told it was a normal part of life after breast cancer, and it could be that I was depressed because of what I’d been through. I felt like my physical symptoms were being dismissed.

“Now I have been to a fatigue clinic and have coping mechanisms, but it’s still frustrating and has affected my self-esteem. I have to plan how I use my energy very carefully and can’t be spontaneous. I can’t be the mum I was before, especially to my teenagers.”

 

Debra Livermore, 55, from Devon, was diagnosed with breast cancer in January 2016 and went through surgery and radiotherapy. She suffered from PTSD after her treatment ended.

“It was about three months after treatment that everything hit me. I just didn’t expect it at all, as I’m a real ‘just-get-on-with-it’ kind of person and I was like that all the way through treatment. When it’s over, you think you’re going to feel a great surge of relief, but you end up just thinking ‘What next?’ You want to get back to normal, but it’s never going to be the normal you knew before.

“I blocked it out for a while. I found it hard to admit to friends and family because they had all said how inspirational I’d been with the way I handled treatment – I didn’t want to let them down. When I finally admitted I was struggling, it was such a weight off my shoulders.  

“I saw a counsellor to talk it through, and she helped me to see how to cope with things. I still have bad days, but I know how to deal with them better now. I’m also using the BECCA app to help me with things like mindfulness and daily coping techniques.”  

 

About Breast Cancer Care

When you have breast cancer, everything changes. Time becomes measured in appointments. The next scan. The next results. The next challenge.

At Breast Cancer Care, we understand the emotions, challenges and decisions you face every day. So, from the day you notice something’s not right to the day you begin to move forward, we’ll be here to help you through.

Whether you want to speak to our nurses, download our specialist information or connect with volunteers who have faced what you are facing now, we can help you feel more in control.

For care, support and information from day one, call us free on 0808 800 6000 or visit breastcancercare.org.uk