If you are referred to a genetics specialist

You may wait for a few weeks or months before you see a genetics specialist.

Genetics specialists use your family history to work out if there might be an increased risk of cancer in your family. They will use your GP’s referral but may need more information.

They may send you a family history form to fill out and send back to them before your meeting. This will usually ask you:

  • the names and ages of your family members (this usually begins with grandparents)
  • their relationship to you
  • whether they are on your mother’s side or father’s side of the family
  • what cancers your relatives have had
  • at what age were they diagnosed.

Some of this may be difficult. For example, if you have to speak to family members you haven’t been in touch with for a long time. Or talking about these issues may bring back painful memories. Some family members may have different feelings about looking into cancer in the family.

Don’t worry if you aren’t able to find out all the facts. Your genetics specialist will understand.

There are cancer registries across the UK. Genetics specialists can check them to find which cancers people have had in the last 20 years. They can use this to find out some of the information if necessary. They will need permission from your living relatives who have had cancer before they can check their health records.

Your family history of cancer may not show a clear pattern of inherited cancers in your family. In this case, the genetics clinic may decide you are unlikely to have a high risk of cancer and don’t need an appointment to see them. The clinic should tell you of their decision in a letter. But sometimes this doesn’t happen. So, if you don’t hear about your referral after a few months, check with your GP.

Sometimes, the genetics clinic may decide you are unlikely to have inherited a cancer gene. But they may suggest you have extra screening based on your family history.

If you have questions about their decision, you can call the genetics clinic. The letter they send will usually include a contact number for a genetics specialist.

Your cancer risk assessment is based on your family history. If there is a new diagnosis of cancer in your family in the future, this may change your risk. You can always go back to your GP for a further assessment if your family history changes.

The counsellor drew a family tree back to my grandparent’s. Points were allocated for every case of breast or ovarian cancer. You have to have enough points to be tested.