Amy K. Siston, PhD, is an assistant professor in the Department of Psychiatry and Behavioral Neuroscience at UChicago Medicine, where she serves as the director of the Psycho-Oncology Program. Dr. Siston is a licensed clinical psychologist and an American Association of Sexuality Educators, Counselors, and Therapists (AASECT) certified sex therapist. Dr. Siston has specialized in psycho-oncology for 30 years and provides clinical psychology services to people with cancer from the time of diagnosis and treatment through survivorship and end of life.
“I have no libido.”
“Doc, my penis shrunk.”
“Sex is painful, not pleasurable.”
“It’s hard to feel sexy with an ostomy.”
These are some common sexual issues reported by cancer survivors following their diagnosis and treatment.
Decades of research examining sexual function in cancer survivors suggest that anywhere from 20% to 100% of survivors will experience some sexual issue. And, while 60% of cancer survivors will end up with long-term sexual issues, fewer than 25% of them will seek professional help, according to a 2014 article in the Journal of Psychosocial Oncology.
Many people with cancer and survivors don’t bring up their sexual health concerns with their health care team, for a variety of reasons. Some people don’t feel like they have enough time to discuss these concerns at appointments. Others are embarrassed to bring up sexual issues or simply do not know what to ask. And although health care professionals agree that addressing sexual issues is important to a person’s quality of life, few bring it up with their patients either. This affects female patients even more, as compared to male cancer survivors; female survivors are 41% less likely to be asked about their sexual health by their health care providers, according to data presented at the 2020 American Society for Radiation Oncology (ASTRO) Annual Meeting.
This lack of conversation around sexual health causes many cancer survivors to not receive the support they need for addressing sexual issues. And, many survivors are not prepared to deal with changes in their sexual function, body image, and/or intimacy after cancer. Here, learn how you can get help with addressing your sexual health concerns throughout survivorship.
What do cancer and sex have to do with each other?
Overall, 44% of all female cancer survivors and 29% of all male cancer survivors have a cancer that directly affects their sexual organs, according to 2022 data published in CA: A Cancer Journal for Clinicians. Accordingly, much of the research that has been done to date examining sexual issues in survivors has focused on survivors of breast cancer, prostate cancer, and gynecologic cancers, which include cervical cancer, ovarian cancer, uterine cancer, vaginal cancer, and vulvar cancer. Less research has focused on sexual issues for survivors of cancers that do not directly affect sexual organs but still indirectly impact sexual response, such as head and neck cancer, lung cancer, and blood cancers.
How can cancer treatment lead to sexual issues in survivors?
Cancer treatment contributes to changes in sexual function, with many survivors reporting problems in sexual desire, arousal, orgasm, pain, and body image. Emotional distress is often associated with these issues, too. Different types of cancer treatment can lead to varying sexual health issues.
Hormone therapy. Hormone therapy is commonly used to treat breast, prostate, and other cancers and can contribute to many sexual issues. For female patients, hormone therapy can lead to abrupt and early menopause, decreased libido, vaginal pain, decreased sexual arousal, and/or difficulties with experiencing an orgasm. For male patients, hormone therapy can cause decreased libido, decreased sexual arousal, erectile issues, and loss of a feeling of masculinity. Penis shrinkage, enlarged breast tissue, weight gain, hot flashes, and fatigue are also often reported by people who have received hormone therapy.
Radiation therapy. Radiation therapy can contribute to dry mouth or sticky saliva for survivors of head and neck cancer, which may interfere with kissing or communicating. These side effects can also affect sexual feelings and performance.
Pelvic radiation therapy for prostate, bladder, and colorectal cancers can also lead to erectile issues in male patients. Similarly, pelvic radiation therapy can lead to sexual issues for female survivors of gynecologic or colorectal cancers, including changes to vaginal structure and function, vaginal dryness, and pain with intercourse.
Surgery. Cancer surgery can create many sexual health challenges. For example, 85% of patients treated for prostate cancer may continue to experience erectile issues for up to 2 years following a prostatectomy to remove the cancer, according to a 2002 study in Cancer. Additionally, many patients who undergo a mastectomy with breast reconstruction for breast cancer experience partial or complete numbness of the reconstructed breast(s), and nearly half experience chronic breast pain, according to a 2009 study in the Journal of the American Medical Association (JAMA). These side effects could potentially impact a person’s sexual function.
Alterations in body image following cancer surgery may also lead to sexual problems. These changes in body image are often reported following surgery for breast cancer, head and neck cancer, testicular cancer, and colorectal cancer.
Chemotherapy. Side effects of chemotherapy, including hair loss, skin changes, fatigue, nausea, vomiting, or diarrhea, can affect a person’s sense of sexual attractiveness, their body image, and their sexual desire. And specific types of chemotherapy can cause ovary damage and early menopause, which can bring vaginal or vulvar dryness and pain during intercourse.
Numerous studies have also shown changes in a person’s sexual desire, function, and satisfaction following a bone marrow/stem cell transplant, a procedure that uses chemotherapy and/or radiation therapy.
How can the emotional effects of cancer impact sexual health during survivorship?
Receiving a cancer diagnosis, coping with the physical side effects of treatment, and navigating the social and relationship changes that cancer can bring may all contribute to feelings of depression, anxiety, frustration, anger, isolation, guilt, and a deep sense of loss. Common thoughts and feelings during survivorship that can lead to emotional and sexual issues include:
“No one understands what I am going through.”
“My family tells me to be positive.”
“My partner doesn’t look at me the same way.”
“What if no one will want to date me?”
Depression can affect many aspects of life, including a person’s sexual desire. Meanwhile, anxiety about sexual performance and sexual pain can trigger further sexual issues and create barriers to intimacy for couples. Medications used to treat depression and anxiety work very well in reducing these emotions, but they can also cause sexual side effects. Talking with your doctor about ways to preserve your sexual function is very important when choosing a depression and/or anxiety medication.
Survivors often experience other difficult emotions, too. For some survivors, losing their desire for sex, not feeling sexy, or simply feeling too tired for intimacy can all lead to anger. For other survivors, feeling guilty about changes in sexual function and changes to the intimate relationship can create significant strain in a relationship. And grief and loss for your old life, which is commonly associated with the loss of who you were, what you did, or how you did it before cancer, often goes unacknowledged during survivorship and may lead to more sadness.
Getting help with sexual health concerns during survivorship
Untreated sexual issues will not resolve on their own and may worsen with the passage of time. But the good news is that there is hope. By working with your health care team and sexual health specialists, you can get help with resolving these issues.
Sexual health should be an important part of your care from the time of your diagnosis through survivorship. In 2018, the American Society of Clinical Oncology (ASCO) recommended that sexual health and dysfunction be discussed with patients and that this conversation be started by a member of the health care team. During these conversations, your doctor should acknowledge and normalize that sexual changes are common during and after cancer and its treatment. Talking with your doctor about any sexual health concerns you may have should be part of your routine conversations.
Your health care team has many ways to help you manage sexual issues.
For female patients, health care providers may recommend using a vaginal lubricant, non-hormonal vaginal moisturizer, or topical anesthetics, such as lidocaine, to help with vaginal dryness and/or to reduce friction or pain associated with intercourse. Some survivors may be referred to a pelvic floor therapist, which is a physical therapist who specializes in working with patients to improve the strength of their pelvic muscles. Pelvic floor therapy helps reduce muscle tension through exercises and other therapies, and it has been shown to help reduce sexual pain. Some female survivors may experience changes to their vaginal structure and tissue following treatment, also called vaginal stenosis, and may require dilator therapies to prevent narrowing of the vagina.
For male patients, erectile function may be improved through the use of erectile enhancing medication. Although these medications are effective, they do not resolve all erectile issues, and it is not uncommon for some patients to stop using the medication. Other treatments that are more invasive, such as penile injection therapy or surgery, are also available. Pelvic floor therapy may also be an option for male survivors of some cancers, including prostate cancer.
Emotional and sexual issues specific to cancer survivors, including loss of sexual desire, may be managed with psychological therapy, either alone or in combination with the medical therapies described above. To address these issues, your health care provider may refer you to a sex therapist. A sex therapist uses traditional psychotherapy and specialized treatment to help patients or couples improve their body image, relationship issues, and overall sexual functioning and satisfaction.
During sex therapy, patients may learn to recreate intimacy that brings them comfort and pleasure rather than anxiety and pain. For instance, cognitive behavioral therapy can be used to address anxiety and avoidance, which are often associated with sexual pain. A sex therapist can also educate survivors about sexual communication; understanding the link between thoughts, feelings, and behaviors and sexual symptoms; and focus, mindfulness, or relaxation techniques.
It can be uncomfortable or embarrassing for cancer survivors to talk with their doctor or partner about sexual issues. But sexual health is a quality-of-life issue and an important aspect of cancer survivorship. If your health care providers can’t answer your questions about your sexual health concerns, request a referral to a specialist, such as a mental health professional, a pelvic floor therapist, or a gynecologist or urologist who treats sexual issues. The website of the American Association of Sexuality Educators, Counselors, and Therapists (AASECT) also lists certified sex therapists and counselors by country and state, so you can find help nearby.
The author has no relevant relationships to disclose.