System failure: women with cancer aren’t being told about the effect treatments can have on their sex lives
Having breast cancer is undoubtedly a lot to deal with, but the aftermath of can be hell as well. And it seems we are failing women miserably.
Research carried out by the charity Breast Cancer Now shows that more than three-quarters of women with breast cancer are not being warned about the impact treatments could have on their sex lives – and that means they aren’t getting the advice they need that could help them.
The survey of more than 1000 women found that 77% of patients were not informed about the potential problems for sex and intimacy that therapies like chemotherapy, radiotherapy, long term hormone treatments, or the removal of ovaries could cause.
Breast Cancer Now estimates that some 42000 out of the 54,000 women diagnosed with the common cancer each year, are missing out on the information they need that could improve their quality of life and help maintain their relationships.
Nearly half of the women surveyed (46%) said they had faced sexual difficulties including vaginal dryness and a loss of libido. Some 51% said the problems continued more than three years after the start of treatment.
“[Sex] is a big part of our relationship … I don’t want cancer to take it away from us, it has already taken enough.” – Lorna Whitson
Lorna Whiston, a 25-year-old from Cheshire, was diagnosed with breast cancer in February 2019 and said the side-effects had impacted her intimacy with her fiance.
“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.
“[Sex] is 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.”
Two-thirds of women reported that sexual problems following therapy had stopped them having sex completely, often for extended periods of time.
Only around one in 10 women experiencing these difficulties were referred to support services or groups.
Baroness Delyth Morgan, chief executive at Breast Cancer Now, called the findings “incredibly concerning”.
She said: “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.
Conversations need to be had
“Without a conversation to prepare them for the possible effects on their sexual function and relationships, women can be unsure of where to turn.”
Gynaecologist Mr Onsy Morris says he sees women in this predicament and in some cases it has cost them their marriages.
He says radiation treatments for cervical cancer, endometrial cancer and vulvo-vaginal cancers, can cause burns and scar tissue formation which can make the vaginal walls stiff, tight and less elastic. This can be devastating for a woman’s sex life, he says.
“Some can’t sit down or wear pants or trousers let alone have sex.” – Jane Lewis, Author, ‘Me & My Menopausal Vagina’.
“It can have a profound effect on her ability to enjoy a normal sex life with her partner due to the discomfort and pain she might experience after her treatment”.
If you’ve been prescribed Tamoxifen as part of your long-term management for oestrogen receptor positive breast cancer, it too can also play havoc with your sex life.
“It can cause symptoms similar to those experienced in the menopause, such as vaginal atrophy or thinning of the vagina, dryness, burning, tightness and pain with intercourse. Mostly this is devastating in relatively young women where oestrogen therapy is contraindicated because of their history of breast cancer.”
What can help?
But there are options that can help. Professor Isaac Manyonda says there are medications that can help with vasomotor symptoms like hot flushes and there are also oestrogen creams and pessaries for the vagina that are safe to use in the majority of cases.
There are also newer non-oestrogen drugs like Ospemifene that can have an oestrogen like effect but without the risks. (click here for more information on Breast Cancer and symtom relief.)
Access to information is vital if women are going to be able to make informed choices.
Without it, life can be very uncomfortable says the author of ‘Me & My Menopausal Vagina‘ Jane Lewis. She says she is not surprised by the findings, but she is disappointed.
“My vaginal atrophy group has many ladies in it suffering from dreadful symptoms after breast cancer treatment, [with] some even saying its worse than the treatment for the breast cancer. Some can’t sit down or wear pants or trousers let alone have sex. It’s very sad. As if they haven’t gone through enough already.” she says.
Breast Cancer Now have called on the NHS to inform people diagnosed with breast cancer about the impact surgery and drugs can have on women and are now working with high street retailer Ann Summers to increase awareness.
The charity aims to raise GBP100,000 in conjunction with Ann Summers through sales of a branded product range and fundraising.