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Marls59's avatar
Marls59
Member
11 years ago

Genetic counselling

I wanted to share my experience with all you lovely ladies of my appointment this week at the Familial Cancer Centre. After a wait of 5 months for genetic counseling my two daughters and I attended the Clinic. We have a strong family history of breast cancer. I lost my young sister to Cancer in September. I have had my journey this year also with high grade DCIS and we also lost our Grandmother to breast cancer. The counselor was lovely, caring and informative, explained that my girls are at a high risk of developing breast cancer and need to be monitored from age 35. She also explained that we are not eligible for BRCA1 testing as my DCIS was not invasive, even though I had a high grade 3.9cm tumour removed and which would have become invasive if left! We were devastated and confused re the criteria. The Counselor explained that they enter all the stats into a computer program and this determines the risk and DCIS is not recognised! The session was very worthwhile and informative but very disappointing about not getting the gene test. Marls
  • Hazel_M's avatar
    Hazel_M
    Member
    11 years ago

    I recently had my genetic appointment at the Royal Brisbane Hospital and I am being tested for the BRCA 1 & 2 genes. I have a strong family history as I am the 7th since my maternal grandmother to have gotten BC, this includes my sister, mother, 3 aunts and my grandmother. I had 2 tumours 8mm and 15mm and my DCIS was not invasive. Which state do you live in? They didn't mention anything about a computer program where I went. I am wondering if it's different in every state. I know funding has been cut here in Queensland thanks to the State Government but they still tested me. I can understand your disappointment, especially when you have 2 daughters, it would be good to know if there is a genetic problem not only for them but for any children they have as well. Best wishes to you, 

    Hazel xx

  • Marls59's avatar
    Marls59
    Member
    11 years ago
    thank you for your reply. I am so pleased for you and your family that they have tested you. I am in Victoria so maybe it differs in each state. At the appointment they did say I could pay to have the test done as the government would not fund it. My daughters and I felt it was too important not to have the test so I have had the blood test and will get the result in 6/52. Best wishes, Marls
  • SueVR's avatar
    SueVR
    Member
    11 years ago

    I too was tested in Queensland.  They do not use a computer program but have a very strict set of peramaters that they use to determine your risk.  You cannot be tested in Queensland under Govertment funding unless you have actually been diagnosed with invasive cancer.  My family has a very strong history of BC.

    My Mother had Breast Cancer twice, different types and different breasts - she was not eligible for testing. (She has since passed away).  My sister had very high grade DCIS, she was also not eligible.

    I had Stage 3, grade 3 IDC and was eligible.  I came back negative which was a surprise to everyone.  If I was positive, my Sister and other direct reletives would have been eligible for testing.

    I agree with you though, I was going to pay and do it privately if I could not get it done for free.  My Oncologist is also doing a clinical trial of 8 other genes, which I have recently had blood tests done for.  It will be interesting if anything comes back from that.

    Sue

  • Marls59's avatar
    Marls59
    Member
    11 years ago
    thank you for your reply. I was really interested to hear your family's history of eligibility for testing and would be very interested in hearing about the results of your Oncologists trial. The cost of the testing has come down from previous years apparently and will keep coming down. It cost me $1100.00 but I feel for the families who cannot afford to have the testing done especially if their daughters are in the high risk category, I am still flabbergasted by this! Best wishes to you and your family. Marls
  • Marls59's avatar
    Marls59
    Member
    11 years ago
    thank you for your reply. I was really interested to hear your family's history of eligibility for testing and would be very interested in hearing about the results of your Oncologists trial. The cost of the testing has come down from previous years apparently and will keep coming down. It cost me $1100.00 but I feel for the families who cannot afford to have the testing done especially if their daughters are in the high risk category, I am still flabbergasted by this! Best wishes to you and your family. Marls