Forum Discussion

Federica's avatar
Federica
Member
12 years ago

Can you be denied genetic testing ?

Good morning , hope you are feeling well today. I have a question regarding genetic testing. I've been referred by my GP ( under breast surgeon recommendation as well ) to do a genetic test , after being diagnosed with breast cancer 2 weeks ago. Early stages and I'm going throught all the tests before doing a mastectomy of the left breast (within the end of Feb) . My mother had BC at 49yrs old, my uncle died of some stomach related cancer , and I am 41yrs old. I decided to have a double mastectomy regardless of the results of genetic testing , hopefully I will approved for this. The genetic counsellor warned me that I won't be necessarily entitled to testing , a detailed look into my family tree will be needed to determined if there are enough evidence to justify the test. I don't have detailed enough infos regarding mums side of the family , mum is the only one left and she doesn't know for sure if her aunties had breast cancer. I know it sounds weird but some decades ago in country Italy BC was considered something almost to be ashamed of and was kept very secret . So my question is, is there a chance I won't be approved for testing ? Did you have any problems of this kind ? I can't lie, I was a bit surprised as I through both mum and I having cancer in out 40s was a strong indication , but there you go. Thanks for reading this and I hope you have a good weekend . Federicaxo

7 Replies

  • Federica's avatar
    Federica
    Member
    12 years ago
    Thank you ladies for your comments. We decided to go ahead and pay for the tests anyway as it will determine my options after treatment . Have a great week everyone. Fx
  • Federica's avatar
    Federica
    Member
    12 years ago
    Thank you ladies for your comments. We decided to go ahead and pay for the tests anyway as it will determine my options after treatment . Have a great week everyone. Fx
  • Janet_Plummer's avatar
    Janet_Plummer
    Member
    12 years ago

    Hi Frederica, I'm sure your situation is quite common My mother has had breast cancer (although not until she was 59) and I was diagnosed at 46. My mother has told me there was a lot of cancer in her family - her dad (my grandfather) died of it, his mother and sister also died of it. But the weird thing is nobody knows what their primary cancers were - even for my grandfather who died in the 1970s. Cancer, even as late as the 70s, was regarded as something a bit shameful here in Australia too. At least it was in Bendigo where my mother's family orginated. So I could have had at least three blood relatives with breast cancer ie great aunt and great-grandmother as well as mum but I will never know. I raised the idea of genetic testing with my oncologist  but she said I did not have enough eveidence to justify it.

  • Keryn's avatar
    Keryn
    Member
    12 years ago

    Hi I went into have the counciling for gene testing a couple of years ago and found I didnt have enough "points" to have it done via medicare as I couldnt provide direct family history as I was ADOPTED. I cant afford to pay for it myself so I have forgone this which is a shame as its better to be forwarned about the possability for family I have now. You would think there would be a better system to gage whether you are at risk or not especially when you have absolutely no family history for no fault of your own.

  • Julia44's avatar
    Julia44
    Member
    12 years ago

    I know what you mean about not knowing past history,  I do not have any living relatives(not counting my kids).  My mum died of bowel cancer.  I do not even know anything about my father's side as he died when I was 17.  Nor do I know anything about who died of what on mum's side, so it me it was a worry that I did not qualify for testing due to lack of knowledge of family history

     

    Julia

  • Julia44's avatar
    Julia44
    Member
    12 years ago

    I know what you mean about not knowing past history,  I do not have any living relatives(not counting my kids).  My mum died of bowel cancer.  I do not even know anything about my father's side as he died when I was 17.  Nor do I know anything about who died of what on mum's side, so it me it was a worry that I did not qualify for testing due to lack of knowledge of family history

     

    Julia

  • Deb_F's avatar
    Deb_F
    Member
    12 years ago
    No, you can't be denied testing, but you may have to pay for it yourself which is about $1600. You have to meet certain guidelines to be able to have it for free and if you only know of your mum having breast cancer, that won't be enough. I meet all the guidelines to have the testing for fee but I still haven't decided if I should have it or not.