UK Genetic Prostate Cancer Study

Getting Involved as a Patient

Participating in the study involves completing two forms and providing us with a small sample of blood. You will not have to visit The Institute of Cancer Research in order to participate, the forms and blood kit will be posted to you to complete at your own convenience. Taking part in the study will not affect your medical care or treatment.

Are you eligible to take part?

You are eligible to take part in the study if you fit into at least one of the following groups:

• You were diagnosed with prostate cancer at 60 years of age or under (up to your 61st birthday).
• You and a first degree relative (brother, father or son) both have prostate cancer and at least one of you were diagnosed at 65 years of age or under.
• There are 3 or more cases of prostate cancer in your family.
• You are a prostate cancer patient at the Royal Marsden NHS Foundation Trust.

Being referred to the study

Your consultant or research nurse may ask you if you would like to take part in the study at your hospital appointment. They will explain the study to you and give you a patient information sheet to take home, which outlines how the study works. If you are happy to be contacted they will write to us with your contact details.

Download Patient Information Sheet 43KB

Alternatively if you think you are eligible to take part, you can refer yourself by telephoning us. Please contact Koveela Govindasami (Study Coordinator) or Emma Sawyer (Data Manager), you can find their contact details on our Contacts page.

If you decide to refer yourself we ask that you let your hospital consultant know as they will be asked to provide details of your cancer and its treatment for our research.

What happens next?

When we receive your contact details we will send you a consent form and a family history form.

We are very happy to discuss any of your queries on the telephone so please do ring us if you have any specific queries about filling in the study forms.

Having your blood sample taken

Once we have received your completed forms, we will send you a blood collection kit in the post. This can be taken to your GP surgery and we will write and explain to your GP that you are taking part in the study and may come in for a blood sample to be taken. If your GP cannot take your blood, or you already have an appointment at your local hospital, then the nurses at the hospital will also be able to take your blood sample for us.
We provide a stamped-addressed jiffy bag for your sample to be posted back to us, and we will let you know that we have received the sample safely.

How to involve other members of your family

If you have other family members who have a positive diagnosis of prostate cancer we will ask you if they would consider taking part, and there is space on the last page of the family history form to write in the contact details of any relatives that would like to take part.
We would only ever contact other members of your family with your permission.

We will request some details from your consultant

Once you have agreed to take part in the study and signed the consent form, we will send a short form to your research nurse or consultant to collect some more information about your cancer and treatment. This will enable us in the future to see whether any of our genetic findings are linked to clinical factors such as PSA level or cancer grade.

We may ask for a sample of your cancer tissue

We may ask for a sample of your cancer tissue taken during your original prostate biopsy or operation. We will contact your hospital directly for this and we would only do this with your written permission on the consent forms.

Optional lifestyle and environment questionnaire

You can also choose to fill in an optional questionnaire about environmental factors. Because the causes of prostate cancer are not known, our collaborator Professor Kenneth Muir at the Division of Epidemiology and Public Health, University of Warwick (previously University of Nottingham), is collecting information about the lifestyle and environment of men with and without prostate cancer to see if there is any correlation between lifestyle factors and prostate cancer risk.

This questionnaire is produced and analysed by Professor Muir at the University of Warwick. If you tick the box on the consent form to fill in the epidemiological (interactions of environment) questionnaire, we will send your name and address to Professor Muir, and he will post the questionnaire directly to you.

You will be asked to fill in information about your occupation, exposure to chemicals at work, hormones, smoking, sexual activity, sun exposure, exercise, general health, x-rays and medication, body shape, and diet. You do not have to answer any of the questions that you do not feel comfortable answering, and all of your answers will be anonymised at Warwick University.

Future contact from us

You may not wish to be contacted by us once you have completed the study, and you can let us know this on the consent form which asks whether you are willing to be contacted in future.

If you give permission for us to contact you in the future, we may write to you:
(i) to ask whether your family history has changed at all since you filled in your forms. In order to keep the study updated it would be very helpful if you could inform us if there is a change in your family history or anyone in your family should develop any type of cancer.

(ii) if we find any relevant results in your sample, to ask if you would like to know what we have found. We would offer you the opportunity to discuss the relevance of these results for you and your family with one of our cancer genetics specialists.

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