Intersex people & cancer
All patients have a right to healthcare and information that meets their needs and respects who they are as a person. This includes people who are intersex, also known as having a variation of sex characteristics (VSC), or a difference of sex development (DSD).
We know that there are at least 40 named variations of sex characteristics, and it is estimated that nearly 2% of people are born with an intersex trait. However, many of these traits are often missed or diagnosed later in life. Some of the most common variations include:
- Complete androgen insensitivity syndrome (CAIS)
- Swyer syndrome, also known as 46,XY complete gonadal dysgenesis
- and Klinefelter syndrome, also known as 47,XXY
Health professionals can use a wide range of terms to describe intersex variations. If you find any terms offensive or distressing, let your cancer care team know and tell them the terms you would like them to use.
If you are intersex, there is a chance you may face additional difficulties in your health care experiences. The Government Equalities Office (GEO) recognises that this can be true for mental health, sexual health, and GP services. A survey conducted by the GEO also showed that 12% of intersex people reported being too worried, anxious, or embarrassed to attend an appointment with their doctor.
In cancer care specifically, you may find:
- it harder to find a specialist with expertise in intersex variations
- some information, clinical guidelines, and treatment pathways might not account for your situation
- engaging in healthcare is physically or emotionally difficult due to interventions you may have had when younger
Intersex, trans, or both?
Being intersex is not the same as being trans. To be intersex is to have a variation in your sex characteristics. To be trans is to have a difference between your sex registered at birth and your gender identity. While it is possible to be both intersex and trans, this is not the case for everyone.
Informed consent
For any healthcare you receive, it is important that you are able to access information that you can understand so that you can make informed decisions about your care.
When making decisions about your cancer care, it can be useful for the cancer team to know the details about your intersex variation, the sex you were registered as at birth, your gender, your anatomy, and any hormone therapy you take. Many intersex people report that getting this information from their patient records can be difficult. We recommend that you do the best you can and ask your clinical team to check for the rest.
If you need support when sharing these details with your cancer team you can take someone with you to your appointments. You can also build a relationship with your clinical nurse specialist (CNS) and ask for them to advocate for your needs on your behalf.
Many people find it useful to prepare the questions they want to ask their cancer team ahead of their appointment. This helps to make sure you get to ask for all of the information you need so that you can make an informed decision about your choices.
Referrals and treatment pathways
Cancer, its referral process, and its treatment can sometimes be set up in a gendered way. This is usually based on who is most commonly affected by a certain type of cancer. However, this can make some people feel excluded or stigmatised for not matching other people’s assumptions about who may have cancer or need treatment.
Many of the forms you will find at the doctor do not ask about intersex variations. This may make it feel like you are not represented by the healthcare system and make it difficult to navigate disclosure.
If you need additional support when navigating the cancer pathway as an intersex person, reach out to us to see if we can help. Alternatively, you can contact IntersexUK.
Prior surgeries
Some intersex people undergo surgery as children to make their body align to the norms of what a boy or girl ‘should look like’. Many intersex people advocate that these surgeries are unnecessary and describe them as cosmetic. This can be even more distressing for intersex people who have had surgery that aligns them to a sex or gender they don’t identify with.
In some cases, surgery is done to reduce the risk of cancer. Often, this is done at an age where the person is too young to directly consent. This can lead to trauma and may negatively affect how a person engages with healthcare into their adulthood.
If you feel that you have been affected by this situation, let your cancer team know this to a level that you feel comfortable. This can range from providing full details of your experience, to telling them surgery makes you nervous or uncomfortable due to past experiences.
Having a lack of trust in our healthcare staff or personal support network can feel isolating, particularly when making decisions about your health. This can be especially true if previous surgeries have made you feel stigmatised for being who you are. If you feel this way, it’s important to find support with others who can understand where you’re coming from.
OUTpatients run peer support for LGBTIQ+ people affected by cancer where you are welcome to come and share. For services and support more specific to intersex people, you can contact IntersexUK for more information.
Cancer risk
Some intersex variations can increase the risk of cancer.
We know that people with Klinefelter syndrome have an increased risk of developing non-Hodgkin lymphoma and breast cancer. In Swyer syndrome, there can be an increased cancer risk in the gonads (the tissue that becomes testicles and ovaries).
Removal of the gonads is necessary in some conditions where cancer is already present or has a very high risk of occurring. Surgery to remove the gonads may reduce cancer risk, but this surgery has often been done on people with very low cancer risk and before an age where they were able to consent.
For people where the risk is considered low or the individual’s eventual gender identity is uncertain, ongoing monitoring can be a better way of managing this risk and avoiding surgery without the person’s consent.
Hormone replacement therapy and cancer risk
When surgery removes the gonads, people are prescribed hormone replacement therapy (HRT). HRT can also be prescribed to provide the body with hormones that are not naturally being produced. If you are trans, you may also be taking gender affirming hormone therapy (GAHT).
We know that some hormones can increase the risk of specific cancers by helping them to grow. If you are diagnosed with cancer, a clinical team may review your HRT for your safety. These conversations can be complex, but they are important. We recommend that you talk this through with your cancer care team to a point that you feel you are able to understand your situation and can make informed decisions about your care.
Cancer screening
Cancer screening is a free test provided by the NHS to healthy people without symptoms to try and identify cancers as soon as possible. It is important to understand the cancer screening programmes, so you can know if you are eligible and how you can be screened. However, in some cases the information available may not describe your personal circumstances. If this is true for you, speak to your doctor about which screening you think you might need.
Cervical screening
Cervical screening is a highly effective way of preventing cancer. It looks to find the high-risk types of human papillomavirus (HPV) which are the cause of most cases of cervical cancer.
If HPV is found, they then look for abnormal cells in the cervix with the same sample. They are looking for cells that could develop into cancer if left untreated. Estimates suggest that screening prevents 70% of cervical cancer deaths, but 83% could be prevented if everyone attended regularly.
Cervical screening is for anyone with a cervix. This can include cisgender women, transgender men, and other people with a cervix.
Cervical screening is still recommended even if you have received the HPV vaccine because there are multiple types of HPV, some of which the vaccine may not protect against.
In England and Northern Ireland, cervical screening is offered between the ages of 24.5 and 49 every 3 years. In Scotland and Wales, the test is offered every five years after a person has tested negative for HPV. For those between the ages of 50 and 64, screening is offered every 5 years.
If you do not have a cervix, you do not need to attend for cervical screening. This may include:
- anyone who has had an operation to remove the cervix
- anyone born without a cervix (e.g. a woman with CAIS and no cervix)
If your GP records have your gender marker as female:
You will be automatically invited to cervical screening unless you have opted out.
If your GP records have your gender marker as male:
You will not be automatically invited to cervical screening. You can organise your own cervical screening if you are eligible by making an appointment with your GP or at some sexual health clinics.
Breast screening
Breast cancer screening uses a test called a mammogram which involves taking x-rays of the breast tissue on your chest. The scan looks to find breast cancers at an early stage, when they may be too small to see or feel. Identifying cancer at this stage increases the chance of treatment being successful. These tests are conducted at Breast Screening Clinics or mobile screening centres, not at your local General Practice (GP).
Routine breast cancer screening is for anyone between the ages of 50 and 71 who has breasts, due to either oestrogen produced by the body or oestrogen hormone therapy. This might include:
- cisgender women
- transgender men and non-binary people assigned female at birth (AFAB) who have not had a bilateral mastectomy (an operation that removes the breasts) or top surgery (chest masculinisation surgery)
- transgender women and non-binary people assigned male at birth (AMAB) and who have taken feminising hormones
If your GP records have your gender marker as female:
You will be automatically invited to breast screening when you reach 50, and then every three years until you reach 71.
If your GP records have your gender marker as male:
You will not be automatically invited for breast screening.
Although some intersex variations in men, like Klinefelter’s Syndrome, increases the risk of breast cancer, there is no routine screening pathway for men in the Breast Screening Programme.
For this reason, it is extra important to know your normal and report any changes or potential breast cancer symptoms to your GP as soon as possible. These might include:
- discharge or liquid that comes from the nipple without squeezing
- new, unusual lumps or an area that feels thicker than the rest
- puckering or dimpling of the skin (it may look like orange peel)
- a sudden, persistent, or unexplained change in size or shape
- a nipple that becomes inverted or points in a different direction
- a lump, swelling or thickening in your upper chest or armpit area
- redness or inflammation of the skin
- a rash or crusting of the nipple or the surrounding skin
On its own, pain is not usually a sign of breast cancer. But look out for pain in your breast tissue, chest, or armpit that’s there all or almost all of the time.
Bowel screening
Bowel screening checks for bowel cancer or abnormalities that could lead to bowel cancer using a test known as a FIT test (faecal immunochemical test). The FIT test is very good at detecting blood in your poo that cannot be seen by the naked eye.
In England, Wales and Northern Ireland, everyone aged 60 to 74 years old is invited to screening regardless of their gender. The programme is expanding to make it available to everyone aged 50 to 59 years. This is happening gradually over 4 years and started in April 2021, so it is worth checking with your GP if you are eligible. In Scotland, bowel screening already starts at 50.
The bowel screening programme sends out a testing kit every 2 years to people who are eligible to take part. You need to be registered with a GP to receive your kit. The FIT test is simple and done in your own home. About 2 weeks after your test, you will get a letter with your results.
For more information on screening, the NHS has information on their website about the screening programmes. Alternatively, you might find our screening information for trans, non-binary and gender diverse people useful.
Body image
Some cancer treatments involve surgery to remove a body part.
Depending on the surgery and how it relates to your identity and body, this change may be acceptable, or it may cause discomfort or distress.
It is important to remember that you can speak to your cancer care team about these changes. Some hospitals have psychological teams who can provide therapy to help you work through these feelings.
If you feel that past medical trauma is making these feelings worse or more complicated, it is important to share this with your care team if you can. This is so that they can appreciate your individual situation and attempt to find you the correct support.
Fertility
Some intersex people are fertile and others are not. It depends on the type of intersex variation you have and any surgery you may have had.
Some cancer treatments can also cause issues with fertility. It’s best to talk to a fertility specialist before treatment starts for information specific to you.
If you find discussions related to fertility difficult or upsetting, you can ask your cancer care team or GP for additional support whilst you make these decisions. It may also be useful to discuss your wishes with family or friends prior to making a decision.
If you have any questions or concerns about your cancer care, reach out to us via our contact form to see if we can help.