What barriers do the LGBTQ+ community face in terms of cancer care?

Research shows that if you’re LGBTQ+ you may experience inequalities to the cancer care you receive, including access to screening, diagnosis, clinical care, communications and overall experience on your cancer journey which can lead to worse outcomes.

According to research, you are more likely to be diagnosed with cancer at a later stage and have lower screening attendance rates.   Fear of prejudice, gender-normative clinic environments or previous discrimination or mistreatment may cause you to delay seeking help or advice from medical professionals.

We’re helping to raise awareness of this as everyone should be entitled to equal care

We have produced this page to help raise awareness of the barriers faced by the LGBTQ+ community when it comes to cancer care, and to be a useful resource to help you get the help you need and deserve.

The cancer screening programmes save lives by detecting cancer early, before symptoms develop.  In some cases they prevent cancer by detecting abnormal changes before they develop into cancer.  Catching cancer early, when it is small and less likely to have grown or spread to other parts of the body, means treatment is more likely to be successful.  The current screening programmes in the UK are for bowel screening (FIT test), breast screening (mammogram), cervical screening (smear test), and lung cancer screening which is currently being rolled out and is expected to be complete by 2030.

Cancer screening if you are transgender or non-binary

Cancer screening should be available to everyone who is eligible.  If you’re a member of the LGBTQ+ community, there may be extra things to consider.

How your sex / gender is registered with your GP – most invitations for screening are automatically generated based on the sex / gender listed in your medical records.  For instance, if you are listed as female, you will automatically be invited for breast screening from the age of 50 to 70, and cervical screening from the age of 25 to 64.  However, if you are transgender or non-binary, it may mean you aren’t automatically invited for screening that you’re eligible for, or you might receive screening invitations for screening that you are not eligible for.  If you haven’t received an invitation because you are listed as male on your records, you can “opt in” by contacting your screening provider.  If you are listed as female but don’t have a cervix, you can ask your screening provider to take you off the invitation list.

Effects of hormones or gender realignment surgery

• Cervical screening

If you have had a full hysterectomy and no longer have a cervix, you no longer need to go for cervical screening.  However, if you still have a cervix you should continue to go.  Long-term use of testosterone can cause vaginal or cervical thinning (atrophy) which may make the smear test more uncomfortable.  You can use vaginal oestrogen cream for a few weeks before the test to ease discomfort, or speak to the nurse at your test as they can use a smaller speculum and use a water-based lubricant to make the test more comfortable.   You can also take someone with you for support.  See our cervical cancer page for more information on cervical screening here.

• Breast screening

If you have been using feminising hormones and have grown breast tissue as a result, you are eligible to go for breast screening.  If you have had top surgery where most of your breast tissue has been removed, breast screening will no longer be necessary (or possible).  However, you should still check your chest, armpits, collarbones and nipples regularly for changes.  See our breast cancer page for more information on breast screening and how to check yourself here.

New ‘at home’ screening kits

Due to low cervical screening uptake, the NHS have introduced screening kits that you can do yourself in the comfort of your own home.

Initially these tests will be available to people who have previously not attended their cervical screening appointments when invited.  They are only available if you are invited to take part, and aren’t available on request.  If you are eligible, you will be invited by the NHS to order an HPV self-test kit online. Your invitation could come through the NHS App, in a text message (SMS), an email or a letter.  The kit contains a cotton-bud-style vaginal swab, simple instructions, and a pre-paid return envelope.  You take a swab of your vagina yourself, and put it in the container provided.  You then post it back in the envelope provided, free of charge.  

Prostate cancer

Prostate cancer is one of the most common cancers in the UK, with 1 in 8 people with a prostate developing the disease in their lifetime.  If you’re Black, or of Black descent, the risk is double.  Prostate cancer has no symptoms in the early stages, so if you have a prostate, it’s important to know the risk factors for prostate cancer.

• Age – If you’re over 50 (over 45 if you’re Black)
• Family history – If you have close relatives who have had prostate cancer or breast cancer
• Ethnicity – If you’re Black or of Black heritage, your risk of prostate cancer is doubled to 1 in 4

You may be worried about speaking to your GP or health professional about prostate cancer, especially if you identify as female or non-binary.  If you have had gender-affirming surgery such as vaginoplasty, the prostate is not removed.  Nowadays, the test for prostate cancer is a blood test to check the PSA (prostate-specific antigen) levels, or MRI.  You no longer need a DRE (digital rectal exam), and if this is suggested you can refuse.  You can also take a friend or family member with you for support.

You can find out more about prostate cancer here.

Charities and support organisations are a great resource to help support you or your loved ones.  They can offer information and support in a variety of ways, practical, physical, and emotional.  Please see below some charities and other organisations that offer help specifically to the LGBTQ+ Community.

It can be really useful to speak to other people who know how you are feeling because they have been there too.  Speaking to those who have a lived experience of cancer as a member of the LGBTQ+ community can be a great source of comfort.  Many support groups also invite speakers or have medical staff in attendance, so can be a great resource to help you on your cancer journey.  Here are some local support groups you may be interested in.