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louiseg's avatar
louiseg
Member
14 years ago

Genetic Testing Results

Hi Everyone

Today I got the results of my genetic testing....it was inconclusive!  I'm not sure if I am happy or not?  If it had been positive, at least I would have know what had caused my cancer and would have taken steps to ensure that it didn't come back (eg having my ovaries removed).  Now I don't really know what to do. 

I am happy that I don't carry the gene, so I haven't passed it on to my kids.  Also, my sister and her family can rest easy.  I guess that technically I also have no higher than normal risk of ovarian cancer, which is a good thing :)

It is very confusing though....they said that even though I don't carry the BRCA1/2 mutations it could still be gene related, just not one that they are currently looking at!  I think I can get re-tested in the future if there are any more breast cancer diagnoses in my family or if the testing methods change.

I guess now I am thinking, well if it's not a gene mutation, then what caused it?  I am pretty fit and exercise regularly, eat pretty well and am not overweight.  I don't smoke or drink to excess.  Why did I get Breast Cancer in the first place? and why twice?  Am I still doing something that will increase my chances of it coming back at some stage?  or is it completely out of my control?

It will be strange once I have finished my Tamoxifen in another 4 years time and have no testing/scans/etc....I think I will still be worried that it will come back somewhere at sometime. I guess that is normal aftering having breast cancer twice though....

Have a great day everyone,

Louise x

2 Replies

  • joleeh5's avatar
    joleeh5
    Member
    14 years ago

    Hi Louise,

    I had the same inconclusive result and whilst I was initially overjoyed that I hopefully hadnt passed this on to my daughters. I was also triple negative which means that it wasnt hormone related and I dont have any further protection for the next 5 years with Tamoxifen. The fear of it returning is starting to consume me and am now thinking that maybe the historectomy would be wise.

    Im guessing because you are taking Tamoxifen that yours was positive to hormones so can it be attributed to hormones?

    Its a really hard tug of war of what to do.

    Keep us posted and thanks for sharing.

    cheers Jo xoxo

  • Dot42's avatar
    Dot42
    Member
    14 years ago

    Hi Louise,

    I sorry that the result has come back inconclusive.   I suppose they will never have a negative result only for famililes who carry that gene. I think authorities can't take that chance of saying negative incase a few years down the track they discover one and then people will be more upset thinking their familes were safe. So this does leave alot of questions and doubts for yourself.   I know what you mean about always worrying about it coming back, it is awful.   I thought if I had a hsyterectomy I would have no hormones so then I dont need tamoxifen.  They advised that other organs in the body also produce the hormones, so I will still have to take tamoxifen.  So I too am worried after the 5 years what happens then.

    Regardless of the result there is no good news either way, you are left with questions and worry. We are so lucky we are born in a country where there is medical care available to us everywhere. We can just be vigilant and go to the doctor for every bump, scratch to protect ourselves.  I most probably become a hypocondriac in the end. ha ha  

    Take care and best wishes for everything

    Dot xxx