Genetic testing for tnbc

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Hi, diagnosed with tnbc middle of August, had surgery and starting EC-T chemo this Sunday followed by radiotherapy. So things moving along.

However, I have asked about genetic testing as I don't fit in the more usual type of person getting this type of breast cancer.  I am 66 and white , no breast cancer in close family but sister had terminal cancer and son very recently finished chemo for his cancer. I have a daughter, sister and granddaughter but my consultant and mdt see no reason to test for genetic abnormalities. 

They say its just unlucky to get tnbc. It is stressing me out that close family could have a higher risk of me passing a faulty gene on.

Anyone else been refused testing or am I just getting wound up for no reason?

Thanks

  • Hi Chaka

    Welcome to the forum and I am sorry to hear that you were diagnosed with triple negative breast cancer.  I was diagnosed with triple negative breast cancer over three years ago and like you I didn't fit the more usual type of person getting triple negative.  I wasn't offered genetic testing either.  Have you had a chat with your breast care nurse about your worries?  If not give them a ring and they should be able to give you an answer.  Alternatively you could ask a Macmillan nurse in the "Ask a nurse" section of the website though you will need to wait a few days for an answer.  Here's the link to "Ask a nurse": Ask a Nurse .

    Wishing you the best of luck with your treatment.

    Best wishes

    Daisy53

    Community Champion Badge

  • Thanks, I will do.

  • Hi Chaka

    what cancers did your son and sister have? Some cancers are linked x

  • Hi,

    Non- hodgkins lymphoma and testicular csncer. Not sure they are related to tnbc though, but very close family. Start my ec-t chemotherapy this morning so will try to have a word with a nurse.

    Thanks Chaka

  • Hi Chaka 

    As far as I’m aware they wouldn’t be related. But I’m not a medical professional. I hope your chemo went well this morning.

    x

  • Thanks. I'll ask my oncologist next time I see him. X

  • I think NHS have a cut off age of 60 for genetic testing.  I just scraped through at 60 and found out I have a genetic mutation called PALB2 which has only been known about in the last 10 years.    You can have genetic testing done privately and think it might cost around £300.  

  • Thanks for this. I will look into it. X

  • Hi 

    yes 60 is the cut off for NHS 

  • I was tested for BRACA 1 and 2, PALB2 and CHEK2.  If I can recall the name of the company that offers private testing I’ll let you know.  It might be Signatera but not sure.