Ovarian cancer is relatively rare but accounts for a disproportionate number of cancer deaths because it is too often diagnosed at an advanced stage. If it is found early, it can be a highly treatable disease. For trans men, ovarian cancer poses an extra challenge, due not only increased risk factors and decreased access to healthcare but also to the increased levels of discrimination faced by the trans community. The National LGBT Cancer Network encourages all of us to pay careful attention to the early symptoms of the disease and seek prompt and culturally competent medical care.
Ovaries and Transgender Men
For the purposes of this article, we are defining transgender or trans men as female to male transgendered individuals who may or may not be using testosterone but who retain their ovaries. Those individuals, who were assigned female at birth, currently identify male, but who did not retain their ovaries, still must be vigilant for possible symptoms.
About Ovarian Cancer
Ovarian cancer develops in the tissue of the ovaries, the reproductive glands where eggs are formed. The National Cancer Institute estimates that in one year approximately 22,000 new cases of ovarian cancer were diagnosed in the US and that nearly 14,000 people died from the disease. In New York State, in one year, just over 1500 people were diagnosed with ovarian cancer, and approximately 1000 died from the disease. We can also say that approximately 1 in 72 people born with ovaries will be diagnosed with cancer of the ovary during their lifetime.
- Although it accounts for only about 4% of all diagnosed cancers in people born as women, it is the fourth leading cause of cancer death for people with ovaries.
- If caught early, the 5 year survival rate for ovarian cancer is over 90%.
- 75% of ovarian cancer diagnoses are made in advanced stages when survival rates are low.
- Most people are unaware of the symptoms of ovarian cancer and have never spoken about ovarian cancer with a doctor. The is especially true for trans men who may feel particularly disconnected from their reproductive organs.
Ovarian Cancer Risk Factors
- Regular Medical Care – Because early detection is so important, risk is increased in those who don’t get regular medical/gynecological care. Because of concerns around the revealing of their gender identity, trans people tend to feel less comfortable about health care and attend fewer appointments.
- Testosterone Use – There is a lot still unknown about the role that testosterone might play in the development of ovarian cancer in trans men. It is essential to monitor testosterone levels. Ideally, this should be done by a medical professional. There is also evidence that surgery which would remove the ovaries, uterus and cervix may reduce the risk of ovarian cancer.
- Personal Health History – People who have had other kinds of cancer, like breast or colon, have a higher risk of getting ovarian cancer. Get checked for Polycystic Ovary Syndrome (PCOS) before starting testosterone. Many trans men have PCOS. Although this is linked to some kinds of cancer, there is no clear evidence at this time that it is associated with an increased risk for ovarian cancer.
- Family/Genetic History – People with a family history of ovarian cancer are at an increased risk of developing ovarian cancer themselves. Some of these people have mutations in the genes called BRCA1 or BRCA2 that raise their risk of several kinds of cancer. Hereditary ovarian cancer makes up approximately 5 to 10% of all new diagnoses.
- Race/Ethnicity – Ovarian cancer rates are higher among Caucasians than other racial groups. One in forty Ashkenazi Jews carry a genetic predisposition to developing ovarian cancer.
- Age – The risk of ovarian cancer increases with age. Most ovarian cancers occur in people over the age of 50.
- Obesity or BMI (Body Mass Index) – Evidence suggests that obesity is associated with increased incidence of ovarian cancer.
- Tobacco – Smoking reduces overall health and increases the risk for a rare type of ovarian cancer, as well as other cancers.
Why Transgender Men may have increased risks for ovarian cancer
- Numerous studies have shown that taking birth control pills decreases a person’s risk of developing ovarian cancer. Trans men are less likely to have used birth control pills.
- Pregnancy and breastfeeding, especially before age 30, have been shown to reduce the risk for ovarian cancer. Trans men are less likely to have biological children.
- As a group, transgender have a higher BMI (Body Mass Index) than is optimal for their height.
- Trans men are more likely to smoke cigarettes or have used tobacco in the past.
- Trans men are less likely to get regular medical/gynecological care than heterosexual women or lesbians.
Detecting ovarian cancer
Unlike some other cancers, there is no recommended annual screening test to reliably detect ovarian cancer. Current methods for detecting ovarian cancer include:
- Bimanual palpation – (feeling of the ovaries using hands). Feeling the ovaries during a gynecological pelvic exam is a widely used technique but it is not sensitive enough to detect early stage cancer.
- CA-125 blood test – The CA-125 blood test measures the level of a cancer antigen found in the blood. Increased levels of CA-125 can be an indication of cancer. However, the test is not seen as a good screening test since this protein can also be released when cells are inflamed or damaged by other kind of illnesses. Also, while 80% of ovarian cancers express CA125, 20% do not. This test is better for measuring the response to treatment than for detecting the presence of the disease.
- TVU (transvaginal ultrasound) – Transvaginal ultrasound is a procedure that uses sound waves to examine the ovaries for abnormalities. A gynecologist usually performs the procedure. This test is usually only done for someone who has symptoms rather than to screen someone who is feeling well.
- HE4 blood test – A new method for detecting ovarian cancer is on the horizon. New study data suggest that HE4, an antigen found in blood, may be the best single marker for detecting stage 1 disease. Testing for both the CA125 and HE4 biomarkers could potentially improve the detection of ovarian cancer, particularly in its early stages, when treatment is most effective. However, like other measures for this disease, this is typically only given to women with symptoms, not to screen otherwise healthy women.
- Surgery – A cancer diagnosis is confirmed with surgery and biopsies.
Symptoms of Ovarian Cancer
Recent studies have shown that people with ovarian cancer are more likely than others to consistently experience the following symptoms:
- Pelvic or abdominal pain
- Difficulty eating or feeling full too quickly
- Urinary symptoms (urgency or frequency)
- Additional symptoms may include fatigue, indigestion, back pain and constipation.
When to see a doctor
If you have any of the symptoms listed above almost daily and persisting for more than a few weeks, see a health care professional. If you’ve already seen a doctor and received a diagnosis other than ovarian cancer, but you’re not getting relief from the treatment, schedule a follow-up visit with your doctor or get a second opinion. Remember, if found early, treatment is highly successful.
We know that it can be difficult to find an affordable and culturally competent health care provider, but we urge everyone who is experiencing symptoms to seek prompt medical attention. It is often helpful to bring someone who can accompany you into the examining room. You deserve and need all the support you can get. Also, it can be extremely helpful to have an extra pair of ears to remember everything the doctor said. If surgery is recommended, studies suggest that the best results occur when the surgery is done by a gynecologic oncologist.
Take care of your body. It is the only one you have. Find out about your family’s health history and if possible, talk to a genetic counselor. Eat well and try to find an LGBT tobacco-cessation program if you currently smoke cigarettes. Pay attention to any changes you experience in your digestion and bowel or bladder habits. If these changes persist, make an appointment with an LGBT-friendly provider in your area and take a buddy with you for moral support. Ask your friends and even your insurance company or local hospital to find a provider you can speak with about your sexual orientation, gender identity and health risks.