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Braca testing?

Lorriesue63
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Good morning, not quite sure what to do!

my mum passed away 10 years ago, with metastic breast cancer, she was first diagnosed in her late 50's, and had 5 years clear after a lumpectomy and radiotherapy. She was  rediagnosed and died after 18 months in her mid 60's. I know she had TNBC at her first diagnosis. My question is would my sister and I know, if it was a Braca gene mutation? Should we have been tested? Since then 2 of my aunts have had pancreatic cancer (and died), and another one just diagnosed with DCIs ? Both over 60 at diagnosis?  My sister and I are 57, and 58 with daughters and granddaughters? Shall we ask to be gene tested? Or would we have been told when my mum was diagnosed? Prob 20 years ago? Thank you! Sorry it's so long! 

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    [@Lorriesue63]‍ 

    Hi, sorry your going through this. My advice would be to see your GP asap and ask if your eligible for genetic testing. 

    I was diagnosed with BC at 32 and had previously asked for testing.. however I had no immediate family members with BC , only my aunt, cousin and granny on my dad's side so was refused. Unfortunately, a few years later after my own BC diagnosis it was confirmed I have a BRCA 2 gene mutation. 

    I'm just glad I can help my family members get the tests now. 

    They don't often come to you for testing, I've had to give a letter to my family confirming the gene mutation, now they have to book an appointment with their gp and go through the process. 

    Any questions please ask, I wish you the best

    Phili xx

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    Hi there. I lost my mum to breast cancer at a young age, she was only early 30s when she passed. She survived initially but it quickly returned and spread everywhere.

    My sister has had various gyno issues and our GP suggested maybe testing for the BRCA. We completed the extensive application for it and sent it off and we were rejected on the basis it was only our mum affected in immediate family. 

    We have a lot of cancer both sides of the family but only my mum had breast. 

    Based on our application we have both had our mammogram start age lowered from 50 to 40. But they wouldn't test us for the gene

    I'm now in my 30s and have a little girl so it's something I've wondered about. I know you can pay to get it done privately but unsure of the costs.

    Definitely have a word with your GP and you can always complete the application and see if they think you are suitable for testing x

  • Offline in reply to Jo22Jo

    Many thanks for your reply, I think it's around £1400, to get tested! Which is a lot! Sorry you got rejected and a big hug regarding the loss of your mum at such a young age. I hope both you and your sister have good mammogram results! X

  • Hello LorrieSue63 and thanks for posting, 

    I am sorry to learn about your family history of cancer and can understand you wondering about genetic testing. 

    The criteria for genetic testing in the NHS has probably changed over the past 20 years, but in terms of how strong/significant your family history is, I think it would be best talk this over with your GP - I don't think you can assume you would be approached if you were eligible for genetic testing. GPs can refer to and take advice from NHS genetic services. 

    There are guidelines for genetic testing which a family history has to match up before it would be considered. These take into account the type of cancers family members have had and the age they were when they developed them. The history is used to work out the probability of a cancer gene being in a family and depending on that probability score some people can be tested in the NHS. So it is a good idea to find out if you can get referred and have this done properly.    

    If you live in England or Wales it might be worth reading the National Institute for Health and Care Excellence (NICE) guidance for women with breast cancer in the family. You can find this here. 

    And if you haven't already seen it, our website  has some information about inherited cancer genes at this link .

    Please do get back to us if you have any more questions or give us a call us on 0808 800 4040. We are here from Monday to Friday, 9am to 5pm.

    Best wishes,

    Julia 

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    There is a new gene defect called PALB2, it has been associated with breast and pancreatic cancer so please ensure that you are tested for that too (I have it).

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