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Clinical genetics dept

Posted By BlueSkies123!

"Clinical genetics dept"

About: Royal Devon & Exeter Hospital (Wonford) / Cancer Services

(as the patient),

Following a recent diagnosis of Breast Cancer, I completed a form for genetic testing dept. Being estranged from my blood family I only had vague information & contacting my blood mother for further info is not an option. There is breast cancer in the previous 2 generations before me.

In the end, I got a letter stating they did not consider me high risk, so no testing would take place. I wonder how this decision can be made with only partial info? How are patients that are adopted dealt with? I can't help feel slightly penalised that due to the estrangement with my blood family that the lack of info has effected this decision.

In the letter I received it offered advice for my sister, whom I am also estranged from. I have little interest in any advice that they have for her, and tbh I was upset by the reference. Perhaps consideration to patients with estranged families needs to be considered further in future communications.

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Responses

Response from Sarah Gibson, Lead Genetic Counsellor, Peninsula Clinical Genetics Service, Royal Devon University Healthcare NHS Foundation Trust 6 months ago
Sarah Gibson
Lead Genetic Counsellor, Peninsula Clinical Genetics Service,
Royal Devon University Healthcare NHS Foundation Trust

Submitted on 12/02/2025 at 13:14
Published on Care Opinion at 13:14

Dear BlueSkies123!

My name is Sarah, and I am lead genetic counsellor for the Peninsula Clinical Genetic Service. Thank you for your recent submission via Care Opinion, I do appreciate you taking the time to complete this feedback, particularly given that it has not been an easy or positive experience for you.

While cancer is sadly common, it is relatively rare for cancer to be due to an inherited cancer predisposition gene. We are asked to assess risk and eligibility for genetic testing against criteria set out nationally. We take into account information about an individual (such as age of diagnosis and specific pathology), and where possible, family history information. If someone is adopted, or has no contact with their family, we have an adjustment to our risk assessment process to take this into account. I am sorry that it felt that you were being penalised for being in the difficult situation of not being able to provide any more information due to estrangement from blood relatives. We do try to build that into our work up of your risk and hope to reassure you that this was not the case.

I would also like to apologise that you were upset by the advice provided for other relatives. In genetics, we have a responsibility for whole families, not just individuals. However we recognise that the information and particularly the phrasing of the letter could be improved, and I will bring this to attention of our clinical team so that we can ensure this is dealt with more sensitively in the future.

If you would value an appointment with Clinical Genetics to discuss the assessment in more detail, then please do not hesitate to contact the department. We can offer consultations in person, by video or telephone. Our main phone number is 01392 405752, or you can email the rduh.pcgsmedsecs@nhs.net to ask them to re-activate your referral.

Thank you again for your feedback, and I do wish you all the best with your ongoing care.

Kind regards

Sarah Gibson

Lead Genetic Counsellor

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