Low libido, difficulty with intimacy, shame and infertility. The Amsterdam UMC is investigating the consequences of cancer on the love and sex life of young adults between the ages of 18 and 39. According to researcher Vicky Lehmann, this is a subject that treating physicians and other healthcare providers still pay too little attention to.
Cat, 38, was diagnosed with breast cancer three years ago. She is now cured, but has also paid a price for it. “The real work comes afterwards. During the treatment you enter a kind of survival mode, you do the things that you have to do. The practitioners mainly focus on treating the cancer – and that is very logical – but there are also many subjects to consider. Sexuality is certainly such a subject.” For example, chemotherapy tackles the cancer, but also, for example, the mucous membranes. “In your eyes, your mouth, but also underneath. And that is very annoying if you want to be intimate with someone. That just hurts. And those are the things that are not immediately discussed in the treatment rooms. My trauma is very with having to stop breastfeeding suddenly, with another it is unwanted childlessness, and with yet another not being able to be intimate with your partner.”
Hot flashes, erection problems and vaginal dryness
Cat participated in the FROSA study by Vicky Lehmann, researcher at the Department of Medical Psychology at Amsterdam UMC. FROSA stands for Fertility, Romance and Sex after Cancer in Young Adulthood. Lehmann wants to know how young people experience sexuality, intimacy and dating after they have been cured of cancer. Because such a treatment hits hard and can have all kinds of side effects. “Hot flashes, erection problems, vaginal dryness.” In addition to physical problems, young patients also experience shame and insecurity. “Because of scars, for example, or they wonder who else wants to date them. ‘I have a low libido, who wants me then?'”
In the past year, Lehmann has been researching the effects of cancer on sexuality, relationships and the possibility of starting a family. She also wants to know what care and information young adults with cancer (also known as AYA – Adolescents and Young Adults – in the medical world) need in that area. About 170 cured cancer patients completed an online questionnaire and more than forty people were interviewed. Especially women.
“What you liked before the disease doesn’t feel nice anymore”
32-year-old Marloes has breast cancer. She’s not getting better. She would have liked to participate in the research, but her illness makes her head too confused. Marloes is engaged and will be married in two weeks. She also notices that the cancer affects how she experiences the intimate moments with her future husband. “Mainly because of the side effects of the treatment. What you liked before the disease no longer feels good at all. It hurts a lot.”
Fertility maintenance
With some cancers, the patient may lose his or her fertility. Then you can choose to have your sperm or eggs frozen. They call it fertility preservation. According to Lehmann, this is not a choice that you just make. Yet there is often hardly any time to think about it. “That fertility preservation is always offered like ‘just do that, then you have something for later’. That is fairly easy for men, for women it is a bit more complicated.”
The freezing of eggs is physically very drastic for women and that is why, for example, a treating doctor should take more time to discuss it, says Lehmann. “An oncologist should know that sexuality and fertility play a role. But I think there is also a task for a broader team to discuss that further. Nurses and social workers who look more at which domains play a role in a young adult, including sexuality.”
Lehmann will complete her research in mid-April. Young adults who have been cured of cancer and still want to participate in the research are welcome here justifiably.
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