Intersex people and cancer

Intersex people may have had surgery as children to assign a sex, to make their body fit gendered norms, or to reduce the cancer risk. This surgery may have changed the appearance or removed parts of the genitals and reproductive organs. It may have happened before you could make your own decisions, or before your parents had enough information to give informed consent. Some people later reject the assigned sex and identify with a different gender, and some surgeries may not have been medically necessary. These experiences can cause distress and grief.

You may have lost trust in family and health professionals because decisions about your body were made without your consent when you were a child. You may not have found out about past surgeries or other medical interventions until you were an adult. Being told that doctors needed to “fix” your body can make some people feel ashamed and stigmatised. Some intersex people distrust the medical profession because they were made to feel like research subjects, photographed or asked insensitive questions.

Some syndromes that cause intersex variations increase the risk of cancer. For example, people with Klinefelter syndrome (47,XXY) have an increased risk of non-Hodgkin lymphoma and breast cancer. The risk of gonadal cancer (cancer in the tissue that becomes testicles and ovaries) is higher in people with some variations such as Swyer syndrome (complete gonadal dysgenesis, 46,XY). While surgery to remove the gonads may reduce cancer risk, it has often been done on people with very low risk. For some people, ongoing monitoring can be a better way to manage cancer risk.

Some people with an intersex variation have had surgery to create a vagina or penis. Cancer can develop in these body parts, but this is very rare. Talk to your doctors about the cancer risk for your variation.

I’ve had constant fears that I’ll get cancer.

Terri Intersex woman

Talk to your doctors about screening tests that are suitable for you. Depending on your variation, the sex assigned at birth or any medical interventions you’ve had, you may not receive appropriate screening reminders for breast or cervical cancer, or you may receive notifications that don’t apply to you. If you find the idea of screening tests difficult, talk to your GP or nurse. Ask them to explain what will happen. For bowel and some cervical screening tests, you may be able to collect the sample yourself.

For more information, see Cancer screening for LGBTIQA+ people.

You may have been prescribed hormones to supply the body with the sex hormones that it can’t produce naturally or to bring on sexual development at puberty. If you’ve had surgery to remove the gonads, you may need lifelong hormone replacement therapy. This can be confronting if you did not consent to the surgery. You may also be on hormone therapy to affirm your gender if the sex assigned at birth does not match your gender as an adult.

Some cancers grow in response to hormones. Depending on the type of cancer and treatment you have, you may not be able to keep taking hormones prescribed for your intersex variation. It’s important to discuss this with your cancer specialists, so you can make informed decisions about future treatment.

Health professionals may use several terms to describe intersex variations, including differences or disorders of sex development (DSD). You may find some terms offensive or distressing. Let your cancer care team know the terms you would like them to use.

Previous surgery may have led to scarring, infertility, incontinence or loss of sexual function, which can all cause anxiety and mental distress.

Some cancers are diagnosed and treated in a gendered way. This may make you feel excluded or stigmatised for not matching other people’s ideas of what it is to be a man or woman. Outdated forms may not include options to record intersex variations. Being made to feel different can lead to distress when talking with health professionals about cancer

Surgery to treat cancer may remove a body part. You may feel comfortable with this change, or you may feel upset or distressed. If you’ve previously had a body part removed without your consent, losing another body part may bring up strong emotions. Talk to your treatment team about how you’re feeling before surgery. For more information, see Body image, gender and cancer.

Some intersex people are fertile and others are not. This depends on your intersex variation and whether you had surgery during childhood to remove testicles or ovaries. Decisions that affect fertility are often made during childhood, usually without the person’s consent. This can lead to feelings of loss and grief.

Cancer treatments can also affect fertility. If your fertility has already been affected by your intersex variation, another change to your fertility can be especially difficult. Talk to a fertility specialist before treatment starts for information specific to you.