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Tony found out he had a altered BRCA2 gene after being diagnosed with breast cancer in 2011. Before that, he had no idea what it could entail – and he worries that many people still don’t.
Like most people, I had ups and downs in my treatment - but overall I felt it went quite well.
As well as the treatment, my breast surgeon persuaded me to go for counselling for gene testing. When I did, I found I had the altered BRCA2 gene which increases a person’s chance of developing breast cancer.
Because of what I’d been through and learnt, I felt I had a contribution to make to the breast cancer cause. So, I got involved with Breast Cancer Now – first through fundraising and raising awareness, and later as a volunteer with Someone Like Me.
Being able to use my voice helps me in my passion to raise awareness of breast cancer in men, but I am also very interested in discussing and learning about the effects of having an altered BRCA2 gene.
I believe there is a lack of awareness around BRCA2, for patients and some healthcare professionals. One important thing I wasn’t made aware of was that if I developed prostate cancer it could be a more aggressive type.
In 2017, I had Prostate Specific Antigen (PSA) tests with both my GP who said it was OK and the genetics team who went on to refer me on to the urology unit. The PSA results were the same. I was examined by a registrar who said I had a thickening of my prostate wall, but that it was not urgent and, as I was going to New Zealand for three months, I should have a biopsy on my return.
There was no mention of a suspicion of cancer.
On my return, the consultant giving me the biopsy said, ‘You’ve come about your cancer’. Apparently, it had been stage 2 when I was assessed by the registrar, and the biopsy would later show it had progressed to stage 3.
It was not until I saw the oncologist that I learned that having the altered BRCA2 gene meant it was more aggressive, and the side effects of radiotherapy may be worse.
I do wonder how having an altered BCRA2 gene affects others with their breast cancer diagnoses and treatments, especially as some people might not even know they have the mutation.
And that’s another issue: the next generation of people who have a parent with an altered gene may view the prospect of inheriting it in a number of ways. Some people may not want to know the result of their parent’s test at all. Some will maybe have counselling and then become more cautious, perhaps getting screened annually. Others will get tested and - if it is found they have a mutated gene - they will take whatever action they deem appropriate (which could be anything from annual screenings to preventative surgery).
There are lots of difficult decisions to be made and while as a parent you may feel it is best your children know if they have inherited the altered gene, they must make their own mind up how to proceed.
I am grateful to Breast Cancer Voices for enabling me to highlight these issues and hopefully make people more aware.
If you are concerned about a family history of breast cancer, altered genes and how it may affect your risk, the first step is to talk to your GP. You can also talk to one of the nurses on our Helpline. You can read more about altered genes and a family history of breast cancer on our webpages.