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"Felling let down"

About: Ninewells Hospital / Clinical Genetics

(as the patient),

I feel like a tiny person in the ocean while all around me I have family members either with cancer or dead from cancer. All I keep being told sorry you don’t meet the criteria.

I have young children and it scares me that I might die and never see them grow up. I was told from the age of 45 I could get routine mammogram but my doctors refused it. From now on I will never feel comfortable contacting the genetic team, they have not told me what the criteria is. I have breast cancer, blood cancer, non Hodgkin lymphoma, stomach cancer and lung cancer in my family.

It is on both maternal and paternal sides. I’m now looking to see if anywhere else can help put my mind a ease as well as my children, that are petrified they are going to lose their mum like I lost my mum when she was 53 years old she caught breast cancer at 45 years old.

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Responses

Response from Kirsten Henderson, Genetic Counsellor, Clinical Genetics, NHS Tayside last month
Kirsten Henderson
Genetic Counsellor, Clinical Genetics,
NHS Tayside
Submitted on 15/04/2025 at 13:23
Published on Care Opinion at 13:23


Hi, I am so sorry to hear you feel this way. I am wondering if we have seen you in clinical genetics? Can you contact us directly at TAY.clinicalgenetics@nhs.scot or phone 01382 632035 so that we can arrange for you to speak with one of the genetic counsellors? Thank you.

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Update posted by leatherzj79 (the patient)

sadly I have been in contact with the TAY.clinicalgenetics@nhs.scot, they were the ones that told me I did not meet the criteria. Every time I found out a close relative has cancer or died due to cancer I would contact them.

I’m now trying to find someone that will listen to my concerns for me and my 9 children. As they are petrified that I’m going to die like their grandmother did and now their grandfather has cancer too.

Response from Nicola McKee, Lead Nurse, Specialist Services, NHS Tayside last month
Nicola McKee
Lead Nurse, Specialist Services,
NHS Tayside

I work as a Lead nurse within the Triumvirate structure for Specialist Services. I provided Leadership and Professional Nursing support to the following teams: Renal, Oncology, Haematology, Neurosciences (which include Neurology, Neurosurgery and all linked specialities), Genetics, Advanced Intervention Service and Pain Service in addition to this I also provide Professional support to the Radiology Nursing service and Stracthro Regional Treatment Centre.

Submitted on 16/04/2025 at 14:16
Published on Care Opinion at 14:16


picture of Nicola McKee

Dear Leatherzj79,

Thank you for sharing more of your story. We’re truly sorry to hear how distressing this has been for you and your family. It’s clear how much you’re trying to protect and advocate for your children, and we’re sorry you’ve felt unheard.

While we understand you’ve already spoken with our genetics team, we’d really appreciate the chance to look into your experience more closely. If you're willing, please contact our Patient Experience Team on details below, so we can explore how best to support you.

Staffnet Patient Experience

Contact the Team

Email: TAY.feedback@nhs.scot

Freephone: 0800 027 5507

Kindest regards

Nicola McKee, Lead Nurse, Specialist Services

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