Sharon Bober, PhD, is a senior psychologist at the Dana-Farber Cancer Institute and an associate professor in the Department of Psychiatry at Harvard Medical School. She is also the founding director of the Sexual Health Program at the Dana-Farber Cancer Institute. You can follow Dr. Bober on Twitter. View Dr. Bober’s disclosure information.
Changes related to sexuality, including concerns about sexual function, body integrity, and relationships, are some of the most distressing problems that affect people with cancer both during treatment and after treatment ends. Even though people with cancer often want support for these challenges, most people do not have conversations about their sexual health with their health care team. There are many reasons for this, including not wanting to make health care providers uncomfortable or assuming that help is not available because the care team has never brought it up. As a result, many people with cancer suffer silently through sexual problems caused by cancer or cancer treatment.
However, it’s important to know that there are many strategies available to help you cope with sexual health concerns during cancer. Here’s what to know about getting the sexual health conversation started with your health care team to get the help you need.
What are some of the common sexual health concerns of people with cancer?
For people with cancer, changes in arousal and desire are very common, especially when people are struggling with other treatment-related side effects such as fatigue, insomnia, and pain. For people who are not partnered, dating and starting intimate relationships can also be very stressful.
As a result of many cancer treatments, male patients may have difficulty being able to get and keep an erection. This is called erectile dysfunction. Erectile dysfunction can be a problem during any type of cancer, not only cancers that affect the urinary tract or reproductive organs. For example, the majority of male patients who undergo a stem cell transplant struggle with erectile dysfunction for years after transplant. For female patients who undergo any treatment that either suppresses ovarian function or intensifies symptoms of menopause, changes in vaginal health are common. These changes can include vaginal dryness, painful intercourse, and changes in pelvic floor health. For all people who go through cancer treatments that impact the body, including both obvious physical changes and changes that may be less obvious such as loss of sensation, changes in body image and body integrity are common and can be psychologically distressing. All of these changes can also have an impact on a couple as well as on the individual. It can be difficult to start a conversation about how things have changed, and it can be stressful when a person worries about not being able to meet their partner’s needs in some way.
Fortunately, there are many strategies to help people with cancer cope with both the physical and emotional challenges of sexual health problems during cancer. Talking with your health care team is an important first step toward getting the help you need.
How can someone with cancer start the sexual health conversation with their health care team?
It is not always easy for people with cancer to initiate a conversation about their sexual health, especially if their health care team has not previously signaled that sexual health is an important part of their routine care. What I recommend is that at the beginning of a visit, tell your doctor that you want to be able to discuss changes in your sexual health. I advise not waiting until the last few seconds of an appointment to bring this up to allow time for discussion.
Second, be as clear and specific about the sexual problems you are experiencing as is comfortable for you. For example, instead of saying something like, “Things are different down there,” it can be more useful to say, “Since starting this medication, vaginal dryness has become severe. I’d like to figure out what to do. Is this something you can help me with?”
Finally, don’t give up! Although you might not get the help or information you need right away, it’s really important to be persistent in getting the help that you need and deserve. This might mean asking your provider for a referral to someone else, talking to another member of your health care team like a nurse or social worker, or doing some research online and looking for a local certified menopause specialist or urologist who specializes in sexual problems. Taking care of your sexual health is an important part of your overall care, so talk with your health care team about how you can get the help you need.
What questions should someone with cancer ask about their sexual health?
One of the most common things I hear from people with cancer is that they wish they had known more about what to expect regarding changes in their sexual health before starting treatment. For people who are just starting cancer treatment, it makes sense to ask about what kinds of sexual changes you might expect from the treatment. For example, it may be helpful to ask:
How might this treatment affect my sexual function?
Will this treatment affect my ability to have an erection?
Will this treatment put me into menopause?
Asking these questions can allow you to be proactive about maintaining your sexual health and prepare for potential changes both physically and emotionally.
It is also OK to ask your health care team if they can help you find a specialist if needed. Some oncology clinicians may only have limited training in sexual health, but they can point you to specialists who can help you.
Finally, there is a growing number of resources available online that can be extremely helpful. Many major organizations have robust amounts of education and information about sexual health during and after cancer, such as the Sexual Medicine Society of North America, the American Cancer Society, and the Scientific Network on Female Sexual Health and Cancer, to name a few. I am also happy to note that there is a growing number of cancer centers that have sexual health programs.
People with cancer need access to support for both the physical and psychological aspects of sexual problems. Living with sexual problems should not be the high price people with cancer have to pay for being alive. Quality of life matters, and sexual health is just as important as any other aspect of health and well-being.