Sexual health and dating after breast cancer treatment
“I don’t want my body to behave like it’s in the menopause when I’m in my thirties.“
The week before Christmas, Alexa (name changed to protect her privacy), had just broken up with her partner. She was upset about her relationship ending when she found a lump in her breast.
“I couldn’t quite take it in. I was only 32 then, no one in my family had had any cancer. The lump appeared quickly and then it was just a whirlwind.”
Alexa went to the GP the same day. She was referred to the hospital for a mammogram, then a biopsy. By February, she was in surgery to have the lump removed. Despite the operation going well, her oncologist recommended follow up chemotherapy and radiation therapy: ‘the belt and braces’ approach, as one nurse told her.
When I spoke to her, she was preparing for her second round of chemo.
I asked her if her care team had talked to her about how her body would change after surgery.
“It was very much, ‘we’ve found this thing, we need to take it out.’ They did say they wanted to conserve as much of my breast as possible. I didn’t really think about it at the time, I just wanted to get it out. It felt really weird, like I wasn’t in my body and things were just happening to me.”
Alexa’s medical team glued over her stitches, which meant there was no dressing on the wound. “I knew there was no way of not seeing it, so I didn’t want to look at it. I was afraid to look down and see my breast.”
She talks to me openly and with a great deal of humour. She tells me she’d been surprised to find she had a blue nipple after surgery. “They didn’t tell me that they had to inject a blue radioactive dye to identify which lymph nodes they wanted to take out. It’s still blue three months after surgery. My friends and I have been calling it the smurf nipple. I don’t remember anything about it in the consent forms. I’d rather have a blue nipple than cancer but it would have been nice to know about it.”
Sexual health, contraception and menopause after breast cancer
Alexa told me that Macmillan had given her brilliant support with practical things, like applying for Universal Credit. But when it came to questions about her sexual health, she wasn’t sure where to go. “I’m diagnosed as autistic so I asked if there was a disability nurse at the hospital, but they told me to contact Macmillan again.”
“When I ask my oncologist sexual health type questions, I feel like they are brushed off. I haven't found much in all the leaflets and guidance either.”
Alexa had joined a private Facebook group for younger women with breast cancer. She’d seen a lot of people talking about early menopause after cancer treatment. Tamoxifen, a hormone therapy used to treat breast cancer, can cause menopausal symptoms. “No one told me about that. There was nothing in the ‘big book’ they gave me. I’m worried about it, I don’t want my body to behave like it’s in the menopause when I’m in my thirties.”
Alexa was diagnosed with hormone receptor positive cancer. “This means I can’t ever use hormonal contraception again, I can’t ever have HRT [hormone replacement therapy, a treatment for symptoms of menopause]. I could get vaginal dryness. What’s my sex life going to be like now?” Hormonal contraception or treatments are not recommended for people with hormone-sensitive cancers as they could stimulate any remaining cancer cells.
Cancer treatment can be a long slog. “I’ve got radiation after chemo,” said Alexa. “Then a year of Herceptin injections. Apparently, those can make your hair thin and leave you with achy bones. Then I’ve got Tamoxifen for 5 or 10 years. So even when I’m done with the chemo, I don’t know how things are going to affect me.”
I asked our Clinical Director, Dr Paula Baraitser, about Alexa’s options.
“In terms of immediate contraception, there are barrier methods (condoms, diaphragms). The non-hormonal coil is also an option for some people [Alexa had a difficult experience with a hormonal coil in the past so felt the copper coil wouldn’t be for her]. For people on Tamoxifen, the main thing to be aware of is the potential menopausal side effects.”
According to Breast Cancer Now, these can include ‘hot flushes, night sweats, sleep disturbance, vaginal irritation (such as dryness and itching, loss of sex drive and mood changes.’
“Booking an appointment at the ‘complex contraception’ clinic at a local sexual health service or at a ‘menopause clinic’ will give Alexa a chance to talk through her options,” said Dr Paula. “If she does experience vaginal dryness, it’s worth starting a conversation about whether vaginal creams that contain oestrogen might be ok. There is very little absorption into the bloodstream. Otherwise, there are products like Replens that don’t contain hormones but have been shown to improve vaginal dryness.”
Before she found the lump, Alexa had got a referral from her GP for sterilisation. She’d put it ‘on the back burner’ since her diagnosis. She found it impossible to discuss this with her oncologist. “My oncologist didn’t want to talk about it. He was more keen to talk about fertility. He asked if I wanted to conserve my eggs. I don’t think he believed me when he said I didn’t want children, but I’ve known for a long time that I didn’t want to be a mum. If anything, infertility would be one good thing to come out of cancer!”
Dr Paula told me that regret is more common if sterilisation is done under the age of 35 and this is why many gynaecologists are reluctant to offer sterilisation to younger people. “This can be very frustrating for women who have made up their mind. However, if Alexa is persistent in explaining why she wants to be sterilised then it will definitely happen when she’s ready to think about it again’.
Getting used to a new body
I asked Alexa how she felt about her body after the lumpectomy.
“I really struggle with body changes in general. I was absolutely terrified of physically having the chemo, so it’s been a bit reassuring that I feel like I can do it.”
Alexa’s surgery removed lumps in her breast and armpit. She has been rubbing bio oil on her scars every day.
“The scar on my breast is not even pink anymore. I’m quite happy with how it’s feeling. When I stand up and look down at my boob, it looks the same as the other one. I don’t have a dent in my side.”
Alexa told she used to love wearing pretty underwear but has given up wearing underwired bras. “It’s not worth the discomfort,” she says. “It’s bad enough coming home and taking your bra off after work; I don’t need any extra pain.”
Breast Cancer Now offers useful hints and tips on finding the right bra after breast surgery, including links to specialist suppliers. Macmillan offers guidance and small grants that can help with the costs of new clothes to fit your body after surgery.
Alexa also joined a workshop with the charity Look Good, Feel Better. They aim to boost the physical and mental wellbeing of people living with cancer.
“The workshop was about skincare and make up. If your eyelashes and eyebrows fall out, makeup can be a confidence booster,” said Alexa. She’s signed up for one on nail care and hair loss. “You have to look at it holistically. You’re not going to feel sexy if you can’t feel good about yourself.”
Finding support online
Alexa has found support and reassurance through the online cancer community.
“There is a lot of generosity online. I found people like Jen's Friends, who make free pillows to sit under your arm after surgery.” She found another charity on Instagram who sent her false eyelashes, and a woman on Facebook who posted her a wig. “She didn’t even ask for postage. It’s amazing.”
Alexa said she had to do a bit of digging as many of these are (understandably) private Facebook groups, but the peer support has been invaluable.
“Some of the ladies in the Facebook groups ask more intimate questions [than medical professionals], like which lubricant was best, or asking about vaginal dilators. It’s good because it’s women talking amongst themselves.”
She also signed up for a course of live webinars with Breast Cancer Now. “I picked one about intimacy, like close friendships, and then one on sex and relationships. That was really useful, but I wish I’d done it after I knew I needed chemo. It would have been better to see it knowing what I know now about my treatment.”
I asked her if she’d been able to get support from friends during the pandemic. “I have got friends who are there for me but they haven’t been able to come in the house. I’m looking forward to mixing indoors.”
Alexa lives alone, and has found it hard to be on her own as she goes through treatment. As a teaching assistant at a school for students with autism, she’d been working from home during the pandemic. She had been quite isolated for months before her surgery. “I noticed in the Zooms that most of them talked about partners or husbands looking after them. I’m a single woman; I would like someone to be there for me.”
Putting the C-word in your profile
I asked Alexa whether she’d tried online dating since her diagnosis.
“I was having very negative thoughts about myself,” she told me. “Why would someone want to date someone with scars? Are they going to find this body attractive? I still don’t know if I will lose my hair.”
Alexa told me she’d experimented with disclosing her cancer on a dating app. “It’s a bit strange, doing the normal small talk. If people ask what I’m up to, I can’t really say I’m at the hospital, getting chemo. I don’t know how to talk to people without telling them.” Alexa decided that if she liked someone she would have to tell them at some point, so she put it in her profile. “Nobody messaged me since then!” she laughed. “I don’t know if I’d be the most fun person at the moment anyway.”
For people living with cancer, their diagnosis and treatment may be the only thing they’ve been able to focus on for a long time. It’s understandable that it would be hard to make small talk with someone you’ve never met before. As one woman said in this Breast Cancer Now piece, “I hadn’t intended to talk about my breasts on my first date.”
For men living with breast cancer, there are other barriers. Many people don’t even know that breast cancer affects men. Men with breast cancer often feel embarrassed about bringing it up, as it's so strongly associated with women. Walk the Walk arranges monthly (virtual) meet ups for men diagnosed with breast cancer, where people can share their experiences and offer different perspectives on telling people about your diagnosis.
Breast cancer can also affect trans men, trans women and non-binary people. One study suggests that trans women may have an increased risk of breast cancer compared with cis men.
Finding a new partner after cancer treatment
I asked Alexa how she felt about sex and dating in the future.
“I almost don’t want to let myself think too far ahead,” she said. “My friend keeps sending me sexy men from TikTok but I can’t even think about dating anyone right now, I don’t have the energy.”
Alexa feels that her experience has changed her perceptions of sex and dating. The Cancer Patient on Instagram made me laugh. They talk about the ‘post cancer ho phase’ when women decide they are really going to go for it and have sex with whoever, whenever.”
Alexa gets why some people want to go that way, but it’s not for her. “I said to my friend, I’m not going to let just anybody have me. The next person that touches this body has got to be a decent one. I’ve raised my standards.”
More information about sex and cancer:
