Having an intersex variation might affect treatment for cancer. There are at least 40 known variations of sex characteristics, and it is estimated that they occur in about 2% of births. Common variations include complete androgen insensitivity syndrome, 46,XY complete gonadal dysgenesis (Swyer syndrome) and 47,XXY (Klinefelter syndrome).

Cancer care as an Intersex person

The cancer care team should offer you care and information that meets your needs, respects who you are, and supports you to make informed decisions about treatment. They should treat you as an individual and work with you in a way that respects your privacy and dignity.

As an intersex person, you may have some added challenges. For example:

• it may be harder to find cancer specialists with an understanding of any health issues you have related to your intersex variation
• clinical practice guidelines that set out recommended cancer treatment pathways may not cover your situation, which can make it harder for you to make informed decisions
• you may avoid cancer screening because of the lifelong impact of inappropriate treatment to manage cancer risk
• surgery for cancer may be a reminder of surgery imposed on you as a child, which may be distressing and traumatising
• you may feel vulnerable because of your experiences of harassment, violence, stigma, exclusion and discrimination (minority stress).

Working in partnership with your cancer specialists to make decisions about your treatment and ongoing care may help you deal with these challenges. Research shows that many health professionals lack confidence and knowledge in treating intersex people. If you have a GP or other specialist looking after your ongoing medical care, they can provide your cancer specialists with any information that is relevant to your cancer care. This may include details about your intersex variation, the sex assigned to you at birth, your gender, your anatomy and any hormone therapy you take.

If you don’t have a GP or other specialist you trust, think about what you want to say and how much you want to share with your cancer specialists. Take someone with you to your appointments to support you with this conversation. To get the correct cancer diagnosis and treatment, your doctor needs to understand your medical history, which may be confronting.

Challenges you might face

Having had prior surgery without your consent

Many intersex people had surgery as a child to assign a sex, to make their body align with gendered norms for male and female bodies, or to reduce the risk of cancer (see next page). This surgery may have changed the appearance or removed parts of the genitals and reproductive organs. It may have been done before you had the chance to decide, or your parents may not have received enough information about the impact of the surgery to be able to give informed consent.

Some people reject the assigned sex when they are old enough to decide their gender, and sometimes the surgery may not have been medically necessary. Both of these things can add to feelings of distress about having had prior surgery.

Feelings of distrust

You may have lost trust in family and health professionals who made decisions for you during childhood without your consent, particularly if you didn’t find out about previous surgeries or medical interventions until you were an adult. Being told that doctors need to “fix” your body can make you feel ashamed and stigmatised.

Some intersex people distrust the medical profession because of being made to feel like a research subject for doctors to learn from, being photographed or being asked insensitive questions about their genitals and internal organs.

Increased cancer risk

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

Cancer screening

Talk to your doctors about suitable screening tests for you. Depending on your variation, the sex assigned Intersex people and cancer 57 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 you don’t need.

If you find the idea of screening tests difficult, talk to your GP or nurse. Ask them to explain what will happen. For some screening tests you may be able to collect the sample yourself, either at home (bowel cancer screening) or at the doctor’s office (cervical cancer screening).

Taking hormones

You may have been prescribed hormones to supply the body with the sex hormones that it is not able to 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 give your consent for 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 is important to discuss this with your cancer specialists, so you can make informed decisions about your future treatment.

Terms used

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

Ongoing side effects

Previous surgery may have led to scarring, infertility, incontinence or loss of sexual function, which can all cause anxiety and mental distress. You may have had further surgeries as an adult to deal with some of these issues.

Gendered treatment

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 you are talking with health professionals about cancer.

Body image

Surgery to treat cancer may remove a body part. You may be accepting of the change or you may be upset because you have lost a part that is important to your sense of self. You can talk about how you’re feeling with your treatment team before surgery. If you have previously had parts of your body removed without your consent, having to lose another body part may trigger feelings of distress.

Fertility

Some intersex people are fertile and others are not. It depends on the type of intersex variation as well as any surgery they may have had during childhood to remove testicles or ovaries. Given that many decisions that can affect future fertility are made before adulthood, and often without the consent of the person, it’s natural to feel grief and loss.

Some cancer treatments can also cause issues with fertility . People whose fertility is also affected by their intersex variation, say the emotions can be especially strong. It’s best to talk to a fertility specialist before treatment starts for information specific to you.