Thousands of women with breast cancer not told about possible impact of treatment on sexual function, research suggests

 

• Breast Cancer Now survey finds three quarters of women asked were not told about the possible impact of treatments on sex and intimacy
• Nearly half (46%) of respondents had experienced sexual difficulties such as loss of libido and vaginal dryness as a result of treatment, with the majority for more than three years
• Baroness Delyth Morgan said: “It is incredibly concerning that the life-changing effects of breast cancer treatment on sexual function and relationships are not being discussed with so many women.”

Tens of thousands of breast cancer patients are not being told about the potential impact of treatment on their sexual function and relationships, a new survey by Breast Cancer Now suggests.^1,2

In a UK survey of over 1,000 women diagnosed with breast cancer in the last 10 years, carried out by YouGov, three quarters (77%) of respondents said that their hospital team had never discussed with them the possible impact of different breast cancer treatments on sex and intimacy.

Research and care charity Breast Cancer Now has today called on the NHS across the UK to ensure everyone diagnosed with breast cancer has the opportunity to discuss all potential side effects of their treatment, including on sexual activity, and receives the support they need.

The findings come as the charity launches a new partnership with Ann Summers to help start the conversation about issues related to sex and intimacy after a diagnosis of breast cancer.

Breast cancer is the UK’s most common cancer, with around 55,000 women and 370 men being diagnosed each year.³

With more women now surviving the disease thanks to decades of progress, there are an estimated 600,000 people alive in the UK after a diagnosis who are living with the long-term physical and emotional impacts of the disease.⁴

After receiving a breast cancer diagnosis, a specialist hospital team, which includes a breast care nurse, oncologist and radiologist, will discuss treatment options and their possible side effects with all patients, to help explain the benefits and risks.

Breast cancer treatment often includes surgery, chemotherapy, radiotherapy and, after hospital treatment ends, hormone therapies, which are often taken for five to ten years to help reduce the risk of breast cancer returning.

Treatments can cause both short-term side effects, such as nausea and hair loss, and longer-term effects, such as fatigue, hot flushes, and impacts on sexual function including vaginal dryness or reduced libido.

In a new UK survey by Breast Cancer Now, nearly half (46%) of women diagnosed with breast cancer in the last 10 years who received treatment had experienced sexual difficulties as a result, with the majority (51%) reporting they had experienced these effects more than three years after starting treatment.

Nearly a third (31%) of women surveyed responded they had experienced loss of libido as a result of their diagnosis and treatment, and a quarter (26%) experienced vaginal dryness.

Two thirds of women (66%) who had experienced sexual difficulties said that they had had a negative impact on their general wellbeing. 41% reported a negative impact on their sexual confidence and over one in five (22%) reported an impact on their mental health. Two thirds of women (66%) also reported that sexual difficulties following treatment had prevented them from having sex and often for a long period of time.

The survey also found that only 12% of women experiencing sexual difficulties had been referred to support services or events to help them discuss and cope with these impacts.

Lorna Whiston, 25 from Cheshire, was diagnosed with breast cancer in February 2019. She said:

“My sex life hasn’t been the same since my diagnosis. No-one warned me about the impact treatment can have on sex and intimacy which, for me, has included loss of libido and vaginal dryness, caused by drugs which have put me into an early menopause. Treatment, particularly the surgery, also impacted my confidence as the scars are a constant reminder that I’ve had cancer and my new breasts feel alien, like they’re not part of my body.

“I would have liked to have been told the possible impact of treatment on my sex life from the beginning as I was left not understanding what was happening to my body, which made me feel upset and frustrated. I had to do my own research and it was only through speaking to others that I found what I am experiencing is normal.

“My fiancée, who I have a two year old with, has been really supportive and knows that sex can be painful for me. However, I know sex is important to us both. It’s a big part of our relationship and it helps maintain our connection – I don’t want cancer to take it away from us, it has already taken enough. Issues around sex and intimacy need to be spoken about more so women know they’re not alone and that there is support out there."

Harriet Hannan, 32 from London, was diagnosed with breast cancer in February 2018. She said:

“Breast cancer treatment was gruelling – surgery, chemotherapy and radiotherapy left me feeling completely exhausted and low. Then on top of everything else I started finding sex painful due to being plunged into a chemical menopause. I wasn’t told this was a possible side effect so it caught us totally off guard and was extremely upsetting for me and my partner the first time it happened. I wasn’t sure where to go or who to speak to and had no idea whether things would get better after treatment.

“I didn’t want cancer to destroy the intimacy in my relationship. Sex was a time when I felt comforted and in control, when my body and appearance felt very out of my control.  So I started looking for help, but it was challenging and I often felt like my concerns weren’t taken very seriously. By this point side effects from the hormone therapy I was taking were having such a drastic impact on my sex life, I considered stopping taking it. It wasn’t until I called Breast Cancer Now’s Helpline that I realised lots of women face these challenges and there are things that can help, and also that things can improve over time.

“Like so many women I wanted more information and support, but finding help for sex and intimacy after breast cancer was like stabbing in the dark. It shouldn’t have to be like this. It’s so important that hospital teams talk about these effects to help you prepare and feel empowered to ask for information or help if you need it.”

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, the research and care charity, said:

“It is incredibly concerning that the life-changing effects of breast cancer treatment on sexual function and relationships are not being discussed with so many women. Our findings suggest that thousands aren’t being prepared for the possibility of a loss of libido, vaginal dryness, or pain after treatment, despite huge numbers living with these devastating sexual difficulties, often for years.

“For many women, the impacts of breast cancer simply don’t end when they walk out of the hospital doors, and the side effects from treatment can impact every facet of their lives. For too long, sexual difficulties have remained a hidden effect of breast cancer treatment, reinforcing a sense of taboo and preventing women from accessing the support they need.

“Without a conversation to prepare them for the possible effects on their sexual function and relationships, women can be unsure of where to turn. With more women now surviving the disease, we must do everything we can to help them live well. That can start with a simple discussion with hospital teams to help normalise these more intimate physical issues. This can help women feel informed and know there is support available, which can make a big difference in reducing the impact of any sexual difficulties on their wellbeing.

“Anyone looking for support and information about breast cancer and sex can call our free Helpline on 0808 800 6000 to speak to one of our expert nurses.”

The partnership between the charity and Ann Summers aims to increase awareness of the impact that the side effects from breast cancer treatment can have on a woman’s sexual wellbeing, as well as encouraging and supporting conversation and discussion.

Additionally, the partnership aims to raise at least £100,000 over a year, for Breast Cancer Now’s life-changing support and world-class research, through the sales of a product range and other fundraising activities.

Ann Summers and Breast Cancer Now have launched a new partnership to help start the conversation about sex, intimacy and breast cancer. For support and information visit breastcancernow.org/intimacy or call the charity’s free Helpline on 0808 800 6000.

ENDS

For further information, or to arrange an interview, please contact: the Breast Cancer Now press office on 020 7749 4115 or 0345 092 0807 or at press@breastcancernow.org If out-of-hours, please contact 07436 107 914.

Notes to Editors:

1. Results from a quantitative YouGov survey of 1,039 women who had been diagnosed with breast cancer within the last 10 years. The sample has been weighted and is representative of women diagnosed with breast cancer within the last 10 years. Fieldwork was undertaken between 25 July 2019 and 11 August 2019.
2. This estimate has been calculated by applying 77.12% of respondents who said that their hospital team had never discussed with them the possible impact of their breast cancer treatments on sex and intimacy, to the number of women in the UK estimated to be diagnosed with invasive breast cancer each year (average of 54,843 women between 2014-16). This is an estimated 42,295 women.
3. Average total of UK invasive breast cancer cases between 2014 and 2016 (55,214), (England - Cancer registration statistics, England. Office for National Statistics. Scotland - Cancer statistics, breast cancer. Information Services Division, NHS National Services Scotland. Wales - Breast Cancer, Welsh Surveillance and Intelligence Unit. Northern Ireland - Northern Ireland Cancer Registry, breast cancer).
4. Updated UK Complete Cancer Prevalence for 2013 Workbook (2017) Macmillan-NCRAS Cancer Prevalence Project.

About Breast Cancer Now:

• Breast Cancer Now is the UK’s first comprehensive breast cancer charity, combining world-class research and life-changing care to build a complete view of breast cancer and make faster progress for everyone affected.
• Steered by research and powered by care, Breast Cancer Now’s ambition is that, by 2050, everyone who develops breast cancer will live and be supported to live well.
• Breast Cancer Now funds around a third of all breast cancer research in the UK. By working with almost 340 of the brightest minds in breast cancer research, the charity is helping discover how to prevent more cases, save more lives and enable more women to live well with the disease.
• The charity’s award-winning information and practical and emotional support services, including a Free Helpline, are there to make sure everyone with breast cancer can get the support they need from the moment of diagnosis to living well during and after treatment. Anyone looking for support or information can call Breast Cancer Now’s free Helpline on 0808 800 6000.
• Breast cancer is the UK’s most common cancer, with around 55,000 women and 370 men being diagnosed each year. An estimated 600,000 people in the UK are alive after a diagnosis of breast cancer, and one in seven women will develop the disease in their lifetime.
• Despite decades of progress in research and care, around 11,500 women and 80 men still die from the disease every year in the UK, with hundreds of thousands more living with the devastating, long-term physical and emotional impacts of the disease.
• Breast Cancer Now, the research and care charity, launched in October 2019, was created by the merger of specialist support and information charity Breast Cancer Care and leading research charity Breast Cancer Now.
• For more information on Breast Cancer Now’s work, visit breastcancernow.org or follow us on Twitter or on Facebook.