Sex is rarely the fun topic it’s made out to be. At the best of times it can be fraught with self-judgment, insecurities, labels, negative body image, guilt, expectations. Pair it with cancer and it leaps into a whole new realm, because it’s no longer sex we’re even talking about, it’s sexual dysfunction – it’s no sex possible, less drive, more pain, instant menopause, erectile failure, stoma in the way, or no more boobs to play with. It’s having your sense of yourself as a desirable being stripped away; it’s loving someone who still wants it and needs it; it’s desiring it but not being capable of having it; it’s the incalculable indignities and the psychological and emotional trauma that accompany every single one of them.
In a recent Cancer Care Ontario survey on patient education Your Learning Matters, 76% of people with cancer from across the province reported changes in sexual function, with 73% reporting changes in relationship with their partner. Anecdotally, people said that they were not getting the information they needed; they were completely unprepared.
If there was material about sexual “health” and how to handle what might be coming in the information package I was handed that first day, I never saw it. I suspect it might be lumped in with a pile of side effects like mouth sores, nausea and fatigue — part of a list. But that kind of list is never that helpful. I had a large tumour in the wall of my vagina — yes that sex place the vagina. But no one was talking about that, least of all me.
Cancer changes everything. When its dust settles (only to be kicked up again, and again) for those of us lucky enough to have it settle at all, we, our loved ones and our potential future loved ones, are left with the shocking, burnt, shrunken, dry, scary, messy, numb, unresponsive, confusing remnants to gather and make something out of. Sex is one of them.
The icky details are different across the many forms of cancer and treatments. What might happen? What might it feel like? How long might it last? Is what I’m feeling normal? Whose job is it to tell us all that?
We’ve all waited hours and hours for appointments. How much longer might we wait if five or ten or 15-minute discussions about sex get tagged on? Surely our oncologists have a thousand other things and a thousand other people to worry about. But it needs to be flagged and we need to be pointed to something or someone that can tell us what’s going on. It’s often embarrassing and easier in the moment to be left unsaid, but normalizing the topic of sexuality is a great place to start. Please ask me how I’m doing down there.
Occasionally the topic of sex, sex-ish or sex bits did come up in a clinical setting. One radiation oncologist, in the way of describing how it would feel after radiating my vagina said Sometimes the ladies walk around with no underwear. Just short of clear. She might also have said the words painful mess, which is a little more illuminating.
When my doctor (kind but uncomfortably eager to pass the discussion of my vagina over to someone else) or nurse tells me about dilators: It’s kind of like when you get your ears pierced, if you don’t put something in it, it can close up. Start with the small ones then move to the larger ones. I’ve got to believe that they’re thinking we might one day want to put something other than a dilator up there.
A friend told me she tried using a vaginal dilator a couple of times then just stopped focusing on that area entirely. Just easier that way. “Maybe I should have asked more about it? Kept pushing the issue.” What she was saying was that maybe it was her fault for not pursuing the conversation. Our discussion brought it all back. “I think I’ll try the dilator again,” she said.
Another friend talked about having her libido disappear, like someone just switched it off. You can’t be in survival mode and want sex at the same time. Sex, she said, falls into the category of things I’ve lost, like the assumption that I’m healthy, that my body will work for me.
She was part of a small study on sex and sexuality in women with gynaecological cancers, that aimed to examine whether talking about it with others, helped. She said it was only looking back on the experience that she realized the value. It broke the isolation. It also made her feel grateful to be in a loving long-term relationship. The single women who were trying to imagine any kind of dating life, were struggling. How do you put yourself out there, what do you have to offer? Mostly the group provided a space for them to grieve the sexual people they had been, and begin to envision the new ones they would become. There are creative options to the old missionary position. Once the tremendous anxiety of cancer subsides somewhat, libido can find its way back. Best to be ready.
Issues related to sex and cancer are influenced by a range of complex factors including age, gender, sexuality, and type of cancer. No one pamphlet can cover it all. It would be way too heavy. Stand-alone topic-based resources would go a long way to meet the range of needs. The issues and concerns for young people, often tied to fertility, are going to be different. The issues for males and females and transgender people will all vary. And given the cancer stats for folks over 50, it doesn’t help that the media, Hollywood, and the advertising world (except of course for Viagra ads and the odd Bridges of Madison County) will have us believe that people that age aren’t having sex anymore anyway, so what’s to discuss?
Asking the question in a survey is a beginning. And like with many polls and surveys, the findings probably under-represent the problem. Expecting folks to just strike up the conversation over chemo is misguided. Let’s get over our collective squeamishness. Let’s make the space to do it. Let’s talk about sex.
Aviva’s advice
For clinicians/staff:
- Cancer is a weird world. Let patients know from the outset that no question or observation about anything they’re experiencing is too personal or awkward to be raised. There may not be an answer for everything, but acknowledging the experiences and letting people know they are not alone really helps.
- Normalize the discussion of sex, sexual dysfunction, intimate relationships and cancer.
- Raise the issue of sexual health regularly and as a matter of course. Don’t make the patient or their loved one bring it up first.
- Assume that sex and sexuality is important to all patients. Let them tell you they don’t need to discuss it.
- Be mindful that your patients may identify as lesbian, gay, bisexual or transgender. That can add an additional layer to an already difficult discussion. Don’t make assumptions.
- Know where to point your patients and their caregivers for more information.
For patients/caregivers:
- You are not alone.
- Being concerned about sex, sexual dysfunction and what the future holds is valid and normal.
- If your doctor can’t answer your questions, ask them who can. No questions are too weird or embarrassing. It’s your body. You need to know.
- It’s within your rights to get the information that meets your specific needs and circumstances.
Have a question related to sexual health and cancer? Please feel free to email patienteducation@sunnybrook.ca. We have information available on the following topics:
- Radiation therapy and sexual health for men
- Radiation therapy and sexual health for women
- Vaginal Dilators
- Erections and sexual functioning for men
- Sexual functioning for women
- Early menopause
- LGBT cancer information
No question is too embarrassing for us. Your email is confidential.
