family history assessment clinic

This leaflet aims:

• To explain the role of the Family History Assessment Clinic
• To give you some idea of what to expect at your appointment with the Nurse Practitioner
• To let you know the type of information you can provide in order to get the most from your appointment.

You will probably have already completed a Family History Questionnaire. This will be discussed during the appointment. Most cases of cancer occur by chance. However, some people may inherit a fault in one of the genes linked to breast cancer which makes them more likely than average to develop certain types of cancer. It is important to stress that only a small number of families have this increased risk of developing cancer.

The Clinic aims:

• To allow people who have a family history of cancer to talk about what this means for themselves and their families.
• To answer questions about inherited cancer and genetic testing.
• To provide information about your risk of developing cancer based on your family history To explain what can be done to lower the risk of cancer and to detect cancer early, when it is more easily treated.

Your appointment will last for about 20-30 minutes. During this time the Nurse Practitioner will talk to you in more detail about the information you have already provided.

We do of course appreciate that this is not always possible or easy, and only expect you to do as much as you are able.

The information from your family history will help us to assess your risk and that of other family members. If you are assessed to be at a higher than average risk of developing cancer, we will discuss what you can do to help prevent cancer or detect cancer as early as possible.

This may include issues such as:

• Screening i.e. Mammograms - used to detect changes in breast tissue, apparent before a cancer arises
• Genetic testing
• Preventative options - such as surgery
• Discussion of lifestyle factors.

You may find it helpful to write down any questions you wish to be answered, before you come to your appointment.

Please note that if mammograms are required these will not be done during this visit but arranged at a later date.

For a small number of people we may be able to do a blood test to see if they have inherited a faulty breast cancer gene. This will not be available at The Park Centre for Breast Care. A referral will be made to a Regional Genetic Centre, usually, but not always, in London. This testing may take many months for any results to become available. However, such a test is not always possible.

These tests do have important implications and may involve further counselling sessions. The purpose of further appointments is to give you time to consider these issues and to discuss them in greater detail.

You may be eligible for extra screening (usually mammograms)because of your family history. The benefits and disadvantages of screening will be discussed with you during your appointment. If you are at a higher than average risk of developing cancer and are eligible for screening we will try to organise this.

If there are other preventative options available for people known to be at high risk of developing certain cancers, these may be discussed with you at your appointment.

There are several research projects in progress which study the inherited aspects of cancer. These will be discussed with you by the counsellors at the Regional Genetic Centres if necessary and/or appropriate. If you are eligible and willing to take part in these studies it would be a great help, but is entirely optional.

We look forward to meeting you. If you have any further questions please feel free to contact us.

If you need more advice about any aspect of The Family History Assessment Clinic, you are welcome to contact:

Susan Heard or Teresa Hoskins
The Family History Department, The Park Centre for Breast Care
177 Preston Road, Brighton BN1 6AG
Telephone: 01273 696955 extension 4111.

(If you reach an answering machine: please leave your name and phone number and if possible a convenient time for us to call you back).

The organisations listed below can provide more information and support for people with breast cancer and a family history of breast cancer. Please note that all of them are widely used and well respected but Brighton & Sussex University Hospitals Trust is not responsiblefor the quality or accuracy of any information or advice provided by these organisations.

Breast Cancer Care
0808 800 6000
www.breastcancercare.org.uk

NICE Guidelines
www.nice.org.uk/CG41/PublicInfo/doc/English

Macmillan Support
www.macmillan.org.uk

This information is intended for patients receiving care in Brighton & Hove or Haywards Heath.

The information in this leaflet is for guidance purposes only and is in no way intended to replace professional clinical advice by a qualified practitioner.