Genetic consultation / genetic counselling

A genetic counsellor or consultant can discuss with you whether a genetic test might be appropriate for you and tell you the benefits and limitations of testing. They can also discuss possible ways of managing your risk. The meeting will last about 45 minutes. There probably won't be a physical examination, but you might decide, together with your counsellor or consultant, to see a doctor or specialist nurse or to go for regular screening.

Screening Back to top

Screening means checking for early signs of the cancer or cell changes that happen before a cancer develops. There are different screening techniques for different types of cancer (see bowel cancer| or breast & ovarian cancer| risks).

Genetic testing Back to top

Some people with a very strong family history of breast, ovarian, bowel, womb| or pancreatic cancer| are also offered a genetic test. You don't have to decide to have any test, or make any other decisions on the spot. You can take all the time you need to think things through. Then you can choose whether to have any tests, screening or any other options your consultant suggests. You don't need to have a genetic test to have any screening available to people who are thought to be at high risk of developing cancer because of their family history..

Preparing for genetic counselling Back to top

Genetic counselling is a two-way process. The better prepared you are, the more you will get out of it. You will also be better able to take part in the decisions that are made. The following questions may help you prepare for your initial clinic appointment:

• What are the names and ages of all your family members?
• What cancers did your relatives have?
• At what age were they diagnosed?

You also need some information about family members who haven't had cancer; for example, their ages and any serious illnesses they have had.

Some of this might be difficult – for example, if you have to speak to family members you haven't been in touch with for a long time. Talking about these issues may bring back painful memories for you or your relatives. Don't worry if you find it too hard, or impossible, to find out all the facts. Your counsellor will understand. There is also a cancer register where doctors can check which cancers people have died from, so they can use this to find out some of the information if necessary.

Your own family history will be very important in working out the chance of there being a genetic susceptibility to cancer in your family. It's a good idea to find out as much as you can about your family history of cancer. At the counselling session the genetics specialist will draw up a simple family tree, based on the information you give them. It will show all your close relatives and their respective illnesses (see example below).

 

 

Getting the most out of your consultation Back to top

Writing down your questions before you go to your consultation will help you remember what you want to ask. Here are some suggestions:

Questions you might like to ask your genetic counsellor

• How do you assess my personal risk of getting a particular cancer?
• How sure are you about this?
• If there is a higher risk of cancer in my family, what are the options for screening or prevention?
• Are there any risks associated with screening?
• Is there anything else I can do to reduce my risk?
• Who else might be at risk in my family?
• Should children be told? Can they be tested?
• Do I need to tell everyone? How do I approach the subject?
• What if I am not at high risk of getting cancer? Will I get any follow-up?
• What if I want a test or screening, but it is not offered to me?
• Do I have to tell my insurance companies about my family history or about genetic tests? (You may want to read our information on the issues to consider before having a genetic test.)

It may be useful to have another person in the consultation, to share your thoughts with afterwards. You may choose to take a member of your family or a friend with you.

If you don’t understand what you’ve been told, tell your counsellor so they can explain again. You can also speak to them another time if you have more questions later on. Most consultants or counsellors will send you a letter after the meeting that summarises all the important points covered in your session. 

Assessing your risk of getting cancer Back to top

Assessing your personal risk of cancer is complex. Having a higher personal cancer risk means you are more likely to get cancer than people in the general population. But, even if you have a cancer susceptibility gene, this doesn't mean that you will definitely get cancer. Certain questions help to assess your cancer risk:

• How many of your relatives have been diagnosed with cancer?
• What age were they when they were diagnosed?
• How many relatives have not had cancer?
• Have there been any rare cancers or combinations of cancers in your family, such as bowel and womb cancer, cancer in both breasts, breast and ovarian cancer or breast cancer in a male relative?
• How old are you?

Even if you aren't at increased risk, you still have the same chance of getting cancer as the general population. Everybody lives with some risk of developing cancer. Most people who get it don't have one of the known susceptibility genes. Assessing your risk of cancer may help you and your doctor to decide what level of prevention and screening is sensible for you. For example, if you are at significantly increased risk of bowel cancer, you'll be offered regular tests to check your bowel for pre-cancerous changes (bowel screening|).