How Cancer and Cancer Treatment Can Affect Sexuality

What is sexuality?

Sexuality refers to how people express themselves in a sexual way. It includes how they see, feel, and think about themselves as a sexual being, and the ways they show it through their actions, behaviors, and relationships. It's very personal and is different for everyone. Sexuality is sometimes called sexual health.

The ways a person shows sexuality or sexual intimacy isn't just through the sex act. Other ways include holding hands, giving special looks, hugging, kissing, clothing they wear, ways they walk and move, etc. A person's sexuality and how they show it can be affected by many things, such as their age, gender or gender identity, partner status, social status, self-esteem, upbringing, emotions and mood changes, and religious and cultural beliefs. It can also be affected by their overall health, and sometimes health problems affect well-being, body image, sexual function, and emotional health. Having sexual problems can sometimes be called sexual dysfunction.

It's important to know that sexuality is not about a person's gender.

• Sexual orientation is part of sexuality and describes how a person is attracted to another person, such as if they are straight, gay, lesbian, or bisexual.
• Gender identity is the gender a person senses or feels they are (not necessarily the sex assigned at birth).

Sexuality and cancer

Sex, sexuality, and intimacy are just as important for people with cancer as they are for people who don’t have cancer. In fact, sexuality and intimacy have been shown to help people face cancer by helping them deal with feelings of distress, and when going through treatment. But, the reality is that a person's sex organs, sexual desire (sex drive or libido), sexual function, well-being, and body image can be affected by cancer and cancer treatment. How a person shows sexuality can also be affected.

Sexual problems often develop because of physical and psychological side effects of cancer and cancer treatments. Some surgeries and treatments might have very little effect on a person's sexuality, sexual desire, and sexual function. Others can affect how a certain body part works, change hormone levels, or damage nerve function that can cause changes in a person's sexual function. Certain types of treatments have side effects such as fatigue, nausea, bowel or bladder problems, pain, and skin problems or other changes in appearance that might cause problems with sexuality. Some sexual problems get better or go away over time, but some are long-lasting and can be lifelong.

Talking about sexuality when you have cancer

For patients

It’s very important to talk with your cancer care team about what to expect, and to continue to talk about what's changing or has changed in your sexual life as you go through procedures, treatments, and follow-up care. This includes letting them know any over-the-counter and prescription medications, vitamins, or supplements you may be taking because they might interfere with treatments.

Don't assume your doctor or nurse will ask you about these and other concerns about sexuality.You might have to start the conversation. Many studies have found that doctors, nurses, and other members of a health care team don’t always ask about sexuality during check-ups and treatment visits. Because of this, patients might not get enough information, support, or resources to help them deal with their feelings and sexual problems.

Studies also show that many doctors and nurses don't know the right questions to ask about sexual orientation and gender identity. Many are not familiar with different terms that describe if a person is lesbian, gay, bisexual, transgender (LGBT), or gender non-conforming (GNC). It's very important to let your cancer care team know your sexual orientation and gender identity, including what sex you were at birth and how you describe yourself now.

If you are a transgender male or female, you'll need to give them a list of any procedures you may have had or any hormones or other medications you have taken or are taking for your transition. Letting your cancer care team know this information will help you get the personalized care you need.

Be as honest and open as possible, and ask questions so your cancer care team can help and so you get the right answers. While you might feel embarrassed, remember your cancer care team must keep the information you tell them confidential. And, once a conversation is started, it's easier to continue it and to bring it up again during your future check-ups.

Most importantly, talk with your partner. Remember that warmth, caring, and physical and emotional closeness are as necessary and rewarding as anything else in your relationship. If you both feel comfortable, it might be a good idea to include your partner when talking with your health care team, too.

Talking to others, such as friends, family members, and other cancer survivors can be helpful. But, it's important to remember that everyone is different, and one person's experience can be very different from yours. Not everyone's cancer or treatment will affect them in the same way. Different types of cancer and treatments have different side effects, and how a body reacts can be better or worse depending on other health problems, too.

Your doctor may refer you to a sex educator, counselor, or therapist to help you deal with some fears and worries about the effects of cancer, or to a professional who might be able to help with physical problems that are interfering with sexuality or sexual function.

For caregivers and partners

Studies have shown that patients report a better quality of life and feel more attractive when they have a supportive partner or caregiver they can trust with intimate details. Being able to talk about their emotional issues and sexual problems with a partner can also help to reassure the patient. For example, caregivers and partners might be able to help the patient recognize problems with self-esteem, sexual desire, and sexual function so they can be openly talked about and effectively managed. They can help track side effects, too, which can sometimes affect a patient's sexuality. Open communication with a partner can help a patient cope and feel more comfortable asking for help.

Depending on the type of problem, going with the patient to treatment and follow-up visits and check-ups might be a good idea, too. If you go, be prepared to write down important information, or ask if you can record the visit.

Before surgery or treatment

Before surgery and other treatments, patients and their partners need to know about possible changes that might affect a certain body part, or their sex organs, sexuality, and sexual function. Having these talks in advance can help know what to expect. But, studies show that not many cancer patients remember being told about sexual risks before surgery or treatment. Asking questions and getting honest answers can open up the opportunity for follow-up talks that lead to making informed decisions about care through the entire cancer journey.  

During treatment

You may have concerns about intimacy and sexual activity during treatment, or may notice changes. It's important to keep talking to your health care team as you move into the treatment phase. Or, if you didn't talk about sexuality before surgery or treatment, you can start talking about it during treatment-related visits, even if your doctor or nurse don't bring it up. Include your partner, if you're comfortable doing so. Remember, if your health care team doesn't know about a problem you're having, they can't help you manage it.

After treatment

People who have finished cancer treatment may have lingering problems with sexuality, and some of them might be lifelong. These can affect relationships, too. Be sure to continue reporting problems, and asking questions during follow-up visits. If you are no longer being seen by a cancer care team, be sure those providing health care for you are aware of problems you've had, what has helped or not helped, and other problems that might come up.

Palliative care

Palliative care can help address sexuality and other quality of life concerns. Ask members of the palliative care team to help manage sexual problems. This team of professionals can help manage symptoms at any time from the point of diagnosis, throughout treatment, and beyond for people living with a serious illness, such as cancer.

End-of life

Sexuality continues to be important for many people with advanced cancer, and for those whose treatment has stopped working. It's important to keep talking about sexuality and sexual problems with the health care team that's managing end-of-life care.