I've Tested Positive, Now What?
Sexual health and intimacy
Many aspects of cancer treatment or preventive care can impact how people view themselves, their experience of desire, and their ability to engage in sexuality and intimacy. The symptoms and severity of these effects will vary, based on the cancer diagnosis and treatment. Some common challenges are listed below.
Change in body image, shape and sensation
Treatment or surgery can lead to changes in body shape, image or sensation. These changes can affect our sense of touch, how our body functions and our self-image. This is especially true for breast, colorectal, , ovarian and endometrial cancers. Hair loss from chemotherapy can affect confidence and wellbeing. Some types of cancer treatment may cause enlarged breast tissue, hair thinning, and genital shrinkage. Sometimes these changes are more obvious, and sometime changes such as loss of sensation are less obvious but still distressing.
Genito-urinary symptoms may be caused by decreased hormones. Treatments that either block hormones or intensify menopausal symptoms often also impact sexual health and intimacy. Vaginal dryness is a common and frustrating side effect that can impact capacity for sexual activity as well as vaginal health more generally. Medications are available to treat this symptom. Erectile dysfunction may result from adrogen deprivation therapy used to treat cancer. Medications, such as Viagra and Cialis—known as PDE5i—may be used to improve erectile dysfunction.
Loss of libido
Libido refers to decreased level of sexual desire. Any treatment or prevention that affects hormone levels?—surgery, hormone therapy, chemotherapy and other interventions—can affect libido in men and women. Menopause?—whether caused by surgery, treatment or normal effects of aging?—can lower libido in women. Other factors, such as body image, relationship quality, physical health and mood may contribute to libido.
Emotional distress, anxiety and depression
A diagnosis of cancer or testing positive for an inherited mutation can affect mental health and wellbeing. Read more in our Emotional Wellbeing section. Psychological wellbeing is also related to a positive experience of sexual health and intimacy.
Improving sexual health and intimacy
Issues of intimacy and sexuality are gaining more attention from the health care providers community and more research is being done to better address them. Despite this, many patients experiencing sexual dysfunction do not receive the care they need. Therefore, it is important for you to tell your doctor if you are experiencing any distressing changes in sexual function and ask about your options for referral to an expert.
Fortunately, there are a growing number of strategies. resources and products available to help improve changes in sexual health, body image and intimacy. Sometimes medications that affect libido, sensation or sexual function can be changed or adjusted. New medication may be prescribed to improve libido or manage side effects, such as vaginal dryness or pain during intercourse. Health care providers trained in couples counseling, intimacy or sexuality may help patients and their partners work through some of these challenges. Some cancer centers now have departments and specialists that focus on long-term quality-of-life issues including intimacy and sexual health.
The following resources can help you locate an expert near you or via telehealth.
Finding sexual health experts
- The Sexual Medicine Society of North America (SMSNA) has a search tool to find experts in your area who sexual health care services.
- The American Association of Sexuality Educators, Counselors and Therapists (AASECT) maintains a tool to help people find a sexual health expert near them.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
- The National Cancer Institute (NCI)-designated comprehensive cancer centers have specialists to manage the symptoms and side effects from cancer prevention or treatment.
The following research studies related to sexual health are enrolling patients.
- NCT04806724: Opening the Conversation Study. This study will look at a program designed to help young couples dealing with breast or gynecologic cancer cope with and communicate about cancer-related reproductive and sexual health concerns.
- NCT04049331: Testosterone Replacement in Male Cancer Survivors With Fatigue and Low Testosterone. The overall goal of this study is to evaluate the effect of a testosterone drug called Depo-Testosterone (or 'testosterone cypionate'), an FDA-approved drug for improving fatigue, sexual function, quality of life, body composition, muscle strength, and physical activity in young cancer survivors who report fatigue and have low testosterone. This study is not open to men who have been diagnosed with hormone related cancers, including or breast cancer.
- NCT04025372: INTREPId (INTermediate Risk Erection PreservatIon Trial). This study is comparing the use of a new form of hormonal therapy used with radiation as a possible treatment for intermediate risk and whether this new form of hormonal therapy is as effective as the standard hormone therapy while also preserving erectile function.
- NCT05636943: Couples' QOL in Breast Cancer (C-QOL). The goal of this study is to measure the effect of a sexual quality of life intervention in women with breast cancer and their partners.
- NCT01788839: Longitudinal Sexual and Reproductive Health Study of Women With Breast Cancer and . The purpose of this study is to see how cancer treatment affects sexual and reproductive function. The patient will also be asked to participate in blood draws to see if and how cancer treatment affects the ovaries and the ability to have children (fertility).
- NCT03257670: Fractional CO2 Laser Therapy Versus 4% Topical Lidocaine Gel for Dyspareunia in Breast Cancer Survivors. This study is looking at whether therapy with a CO2 laser to the vagina is more effective than lidocaine to the opening of the vagina before intercourse to reduce painful intercourse in women who are breast cancer survivors and whether or not the CO2 laser improves pelvic floor function, bowel and bladder function, and sexual function before and after treatment.
- NCT03707340: A Study of Flibanserin in Breast Cancer Survivors on Tamoxifen or Aromatase Inhibitors. The purpose of this study is to determine if flibanserin improves or has any effect on hyposexual desire disorder/HSDD in women who are taking tamoxifen for breast cancer.
- NCT04812912: Changes in Reproductive and Sexual Health in People With Early Onset Colorectal Cancer. The purpose of this study is to find out how cancer treatments (chemotherapy and/or radiation therapy) affect reproductive and sexual health in people with early onset colorectal cancer.
- NCT02706561: Helping Men Adhere to Sexual Rehabilitation Following Cancer Surgery The purpose of this study is to test two different ways to help men with sexual rehabilitation.
- NCT03525262: Oncologic Therapy While Ensuring Neurovascular Conservation (POTEN-C) (POTEN-C). Reduction of dose to or 'sparing' of nerves during radiation for localized cancer may improve sexual health without changing cancer outcomes.
- NCT03716739: Improving Quality of Life of Cancer Survivors With Androgen Deficiency. The goal is to learn if testosterone replacement therapy (TRT) is safe and effective in improving the symptoms of androgen deficiency (sexual symptoms, low energy, and physical dysfunction) and overall health-related quality of life in men with cancer who have undergone radical prostatectomy.