“I was too embarrassed to ask for help”: Devastating impact on thousands who face sexual difficulties after breast cancer

 

• New statistics from Breast Cancer Now show nearly half of women (46%) surveyed had experienced sexual difficulties as a result of treatment
• A third (34%) of respondents who experienced sexual difficulties after breast cancer treatment needed support but didn’t ask for it, with over half (54%) of these women revealing that this was because they were too embarrassed
• Survey stats are released as Breast Cancer Now and Ann Summers launch new partnership to help start the conversation about sex, intimacy and breast cancer
• Keeley Russell (42), who experienced sexual difficulties after going through breast cancer treatment in 2018 says: “Because it’s such a taboo subject, I was too embarrassed to ask my GP for help, even though I needed it.”

Over 150,000 women in the UK have experienced sexual difficulties, including vaginal dryness, pain and loss of libido, as a result of breast cancer treatment, a new survey by Breast Cancer Now suggests.^1,2

In a new UK survey of over 1,000 women diagnosed with breast cancer in the last 10 years, carried out by YouGov, nearly half (46%) of women said they had experienced sexual difficulties as a result of breast cancer treatment.

A third (34%) who experienced sexual difficulties reported that they needed support but didn’t ask their hospital team or GP for it, with over half (54%) of these women saying this was because they were too embarrassed. Other reasons those surveyed gave include: I worried about wasting the time of my hospital team or GP (45%); I felt it was too trivial to raise (48%); I didn’t know who to ask (40%); I worried my concerns would be dismissed (29%).

The findings come as Breast Cancer Now and Ann Summers launch a new partnership to help start the conversation about issues related to sex and intimacy after a diagnosis of breast cancer.

Breast cancer remains the most common cancer in the UK with around 55,000 women and 370 men being diagnosed every year.³

Following breast cancer treatment in 2018, which included a lumpectomy, chemotherapy, radiotherapy, and hormone therapies, Keeley Russell, 42 from Hertfordshire, was too embarrassed to ask for help when faced with issues around sex and intimacy.

Keeley said:

“As soon as chemotherapy started, sex became unbelievably painful and my libido basically disappeared. However, because it’s such a taboo subject, I was too embarrassed to ask my GP for help even though I needed it. I finally ended up emailing him instead which still felt mortifying.

“Not really understanding what was going on made things much worse. My doctors had explained how treatment might affect my nails and hair, but no one mentioned how treatment could cause changes, like pain, and what that meant for me and my enjoyment of sex.  

“Fortunately my sexual difficulties have started to improve slightly due to time, understanding and awareness but this is a long-term issue and support is essential.”

Lesley Lloyd, 57 from Kent, diagnosed with triple negative breast cancer in July 2017, felt that no-one had mentioned to her how treatment, which included a lumpectomy, chemotherapy, and radiotherapy, might impact sex and intimacy. Lesley was in a relationship when she was diagnosed and has been single since December 2018.

She said:

“I noticed sex became painful after chemotherapy and, when I started experiencing bleeding too, I decided to get checked out. However, my gynaecologist told me that ‘it is what it is’ and I was made to feel I should be grateful the cancer had gone. I was shocked and felt dismissed.

“No-one told me anything about how treatment might impact sex and intimacy and my healthcare team offered limited support. Then when I met a group of women through Breast Cancer Now’s Forum and brought up sex, some said they had never spoken to anyone about their issues, and others said intimacy with their partners had completely disappeared.

“I thought to myself, I enjoy sex and really don’t want to lose it from my life, so I gradually improved things by experimenting with toys and having open, honest conversations with my partner at the time. However, now that I’m single, there are new challenges as the thought of explaining ongoing sexual issues from treatment is embarrassing and holding me back from meeting someone new.”

By combining world-class research and specialist support and information services, Breast Cancer Now is aiming to build a complete view of breast cancer, to bring more hope and make faster progress for everyone affected by the disease.

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.

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

“We know that for many people, breast cancer simply doesn’t end when they walk out of the hospital doors, as the side-effects from treatment can affect every facet of their lives for many years. These difficulties, including very personal issues around sex and intimacy, often go unspoken, with women not knowing where to turn, or being too embarrassed to ask for help. 

“There are many challenges to improving sexual wellbeing for women affected by breast cancer, and one of the first steps is starting the conversation and supporting all women who have had a diagnosis to talk openly with their loved ones or health care professionals if they choose. That’s why we are delighted to be working with Ann Summers, to help highlight the scale of the issues many women are facing, as well as encouraging and supporting this important conversation.

“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.”

Jacqueline Gold, Chief Executive at Ann Summers, said:

“As women go through life their sexual desires and needs change but until now, nobody has had that conversation. Women’s sexual pleasure can be important to their mental and physical health but many still think they should be silent and feel embarrassed about it. But we all deserve sexual wellbeing.

“I am very proud that Ann Summers is partnering with Breast Cancer Now to specifically start the conversation about sex, intimacy and breast cancer. Having experienced breast cancer, this issue is particularly important to me - I know all too well the distressing impact diagnosis and treatment can have and how it can affect your confidence.

“Ann Summers has been the authority on female sexuality for fifty years, for millions of women in the UK. Working with Breast Cancer Now, I hope our combined expertise and voice will empower women with breast cancer to talk openly about their sexual wellbeing and seek the support they need.”

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: Georgia Tilley on 020 3105 3360/07436 107914 or email press@breastcancernow.org

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. The survey found that 46.16% of women diagnosed with breast cancer in the last 10 years (and who received treatment) had experienced sexual difficulties as a result of treatment. The estimate of ‘over 150,000’ has been calculated by applying 46% to the number of women estimated to be living after a diagnosis of breast cancer in the UK, in a 10-year period (341,600). Based on figures from - Updated UK Complete Cancer Prevalence for 2013 Workbook (2017). Macmillan-NCRAS Cancer Prevalence Project. This is an estimated 157,683 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).

Additional survey findings:

• 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.
• Issues can last a long time, with half of women (51%) who experienced sexual difficulties reporting that they experienced them for more than three years.

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.