Sexuality is an inherently human trait, an extremely important and often neglected aspect of cancer patient and survivor care.
Sexuality encompasses multiple domains, all of which are impacted by cancer and its treatment. For example, concerns about reproductive and sexual health are among the most common and distressing aspects of cancer survivorship.
The ability to have biological children is important to many cancer survivors of reproductive age. However, treatments for this disease can threaten future fertility and have a major impact on their lives.
In addition, at least half of women survivors experience sexual health problems after cancer. Meeting the changing informational, medical, and mental health needs of survivors over time could have a substantial positive impact on their relationships and quality of life.
And yet, despite the importance of sexual health, it still represents an unmet need around the world.
For example, geographic disparity in sexual health care for women with cancer extends beyond issues related to genitourinary symptoms of menopause and sexual pleasure to the needs of sexual and gender minorities.
Oncologists should ask about sexual health concerns at the time of diagnosis and during follow-up. Incorporating sexual health as a routine systems review or standardized assessment is one way to raise these concerns.
Sexuality concerns are not solely for oncologists to address. Given the many domains in which cancer and treatment can affect sexuality, a multidisciplinary team that includes urologists, urogynecologists, gynecologists, pelvic floor physical therapists, mental health professionals, sex therapists, and others can best meet the needs of people with this condition.
For sexual and gender minorities, too, concerns about sexuality must be part of their cancer care, and this begins with recognition of their identity. Institutions should allow for the collection of sexual orientation and gender identity data and work to become a friendly environment for everyone they serve, including this population.
Effects of Cancer Treatment on Sexual Function
Sexual health can be understood through a biopsychosocial lens, in which all biological, psychological and social factors play a role.
Some surgeries and treatments may have very little effect on a person’s sexuality, sexual desire, and sexual function. Others may affect the functioning of a certain part of the body, 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 can cause problems with sexuality. Some sexual problems get better or go away over time, but some are long-lasting and can last a lifetime.
Addressing loss of desire
Loss of sexual desire, or lack of motivation to engage in sexual activity, commonly occurs after treatment and is a common source of significant distress.
When we think of the side effects of cancer treatment, the first thing that comes to mind is usually hair loss and nausea, not loss of sexual interest and desire.
However, low sex drive is a common side effect of cancer treatment, although it is not often discussed outside of the medical community, causing many patients to be surprised to discover that their libido is affected by cancer treatment.
Not all drugs and treatments cause a decrease in sex drive, but many do. Treatment for gynecologic, prostate, and testicular cancer, in particular, can cause libido problems, but chemotherapy drugs and other medications for other types of cancer can also cause low sex drive.
The human libido is complex and is influenced by many things, from physical changes to emotional state.
Three common causes of low sex drive during cancer treatment are:
Drug side effects: During cancer treatment, decreased libido is often due to the prescribed medication. Chemotherapy, hormone therapy, and other types of drugs are known to cause low libido. Side effects such as nausea, vomiting and fatigue can also inhibit sexual desire.
Side effects of treatment: For women, radiation therapy to the pelvis can cause severe vaginal dryness, decreased production of vaginal lubrication, and shortening and narrowing of the vagina, which can lead to painful intercourse. Although it may not directly affect sexual desire, it can make sexual intercourse so uncomfortable that interest is lost.
Body image: The side effects of cancer treatment, such as hair loss and weight loss or gain, can affect body image, leaving the patient with low self-esteem. If you are uncomfortable with your physical appearance, you may feel apprehensive about sexual intimacy. This is completely normal and both men and women can develop self-esteem issues that directly affect their libido.
How to deal with it
Having a low libido is usually not a permanent side effect of cancer treatment and can be controlled. In some people, libido returns to normal after treatment ends.
Some people with certain types of cancer (gynecologic cancer, prostate cancer, and testicular cancer) may need medical intervention to help increase their sex drive. Women with breast cancer who take hormone therapy may continue to have a decreased libido even after chemotherapy.
Again, side effects vary from person to person and not everyone may experience the same during or after treatment.
Strategies that can help
Communicate with your partner: Keeping your lack of interest in sex a secret can make your partner feel rejected and not know why you no longer want to have sex. Communicating openly about intimacy can strengthen your relationship and help you find creative ways to be intimate in different ways.
Keep your doctor informed: Besides your partner, the first person you should talk to about sexual side effects is your doctor. It may seem like an insignificant or even selfish topic to discuss with your oncologist when your life is at stake, but most health care professionals understand the importance of sexual intimacy during cancer treatment. Your oncologist can prescribe medication to combat the side effects of treatment that may be causing your loss of desire.
Stay away from herbal supplements: It is not recommended that you decide to take supplements on your own. There are many herbal supplements on the market that claim to increase libido naturally, but they can interact with cancer treatment and cause adverse effects. Always consult your doctor about taking any over-the-counter medications during cancer treatment, including herbal supplements and vitamins.
Promote healthy self-esteem: If your loss of interest in sex is related to self-esteem issues, there are several ways to promote a healthy self-image. You might consider practicing relaxation techniques, visualization, or daily affirmations aimed at boosting self-confidence. Be kind to yourself and take note of all the ways your body has helped you. For some people, hair loss or scarring can be a major contributor to low self-esteem. Feel free to explore options of wigs, hats, hairpieces, makeup – or not – listen to your inner voice and do what makes you feel at peace.
Seek help from a qualified professional: Seeing a sex therapist can be beneficial during and after treatment. A sex therapist is a person specially trained to identify and treat obstacles to a healthy sex life. These therapists are also trained to help people who suffer from low libido due to medical reasons.
Cancer and Sexuality in Sexual and Gender Minority Patients
For the sake of clarity, people who define themselves as lesbian, gay, bisexual, trans or queer are referred to as “sexual and gender minorities“.
Members of this community have reported that there is a lack of knowledge on the part of health professionals about their health care needs, with most oncology data focused on cancer screening and prevention. They add that information is often not provided in a patient-friendly manner and they are subject to hostility and discrimination at the structural and health care levels.
For transgender people, the situation is substantially worse, particularly because anatomical screening tests (e.g., prostate exams and mammograms) can be traumatic due to possible non-identification with some organs as part of their identity.
Prostate cancer screening is particularly fraught with risk; for example, trans women may not be comfortable with PSA screening.
The sexuality of lesbian women treated for cancer has not received much attention. An important aspect of this emerging research is the need for questionnaires that adequately capture the sexual health experience of these women. For example, one widely used questionnaire, the Female Sexual Function Index, was considered too narrow and heteronormative by lesbian women, with an emphasis on sexual performance that was particularly male-oriented.
Routine collection of gender identity data in hospital registries is critically important for oncologists because the inability to collect data on sexual orientation and gender identity makes it nearly impossible to assess treatment and post-treatment outcomes in this population and to account for the disparities faced by these individuals.
Providing options and allowing them to respond gives everyone the opportunity to self-identify and be included in further studies that seek to understand their experiences.
Beyond data collection, oncologists can work toward a more inclusive environment in a number of tangible ways, such as:
- Educational Materials
- Inclusive signs in waiting rooms
- Educating your staff on communication strategies
- Routinely provide the opportunity for all patients to disclose their sexual orientation and gender identity, either through a self-administered form or direct consultation as part of the doctor-patient visit.
- Adopt the use of personal pronouns and ask about your patients’ preferred pronouns to show respect for the individual.
Sexuality should be highlighted as an unmet need in people diagnosed with cancer.
In addition, concerns about sexuality are relevant regardless of sexual orientation and gender identity.
More needs to be done to include all people in our health care paradigms, and this starts with allowing them to self-identify and be counted.