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Sister's avatar
Sister
Member
7 years ago

Genetics Appointment

I have an appointment to see a genetic oncologist type person tomorrow.  The generations in my family are all over the place (some of my first cousins were older than my parents) and I don't know much about what people died from (cancer being a dirty word) and have no-one to ask.  Due to this, I'm fairly sure that I will not qualify for any subsidies on genetic testing and cannot afford to pay for it up front.  However, as my sister was diagnosed at 32 and died at 45 from an early detected breast cancer, I am very keen to know what the likelihood of it being genetic is, and what that means for treatment for me.  
Has anyone been in a similar situation and what was the outcome?
Does anyone have any insightful questions for me to ask?
  • Anonymous's avatar
    Anonymous
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  • I will DM you the report I was sent by the Peter Mac Familial Cancer Centre.

    My sister had the testing done in 2015 before she died. No new tests have been developed since then. I had a long chat with the geneticist (who was lovely) and she then sent a report, specifically tailored to me. It advised that my daughter and niece should commence surveillance at 30. This was all free of charge.
  • I had the testing as I was diagnosed at 31, new rules this year is for anyone diagnosed under 35 to get it free. i wanted to know as I have a lot of female cousins, a sister and a daughter.
    i was negative so they are baffled at my young diagnosis, I consented to them to keep testing as new research comes to light. They told me I had a 1 in 4 risk of developing a new primary since I’m so young.
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  • Thanks, ladies.  I suspect I won't qualify as I don't know enough family history but I do want more information regarding likelihood and how it might effect my treatment.
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  • Hi @Sister. I've just done a genetic test and qualified for the free one. It's a point system based on the boxes you tick. I was 38 at first diagnosis (2005)- the younger diagnosis is a tick. I've had 2 subsequent diagnoses - 2009 and May this year. I had a great grandmother have BC and Mx in the '60s but was told that was too far back. Then Oct last year my mum was diagnosed at 73. Dr then referred me for the test. There is also bowel cancer in the family - father and aunty. I was mentally prepared for a +ve result but it came back negative. I couldn't fathom the number of DX I'd had and not have something that caused it. So I'm more confused now. There is another test I can do that is for a larger number of genes known to be linked to BC and I am considering that. I have to pay for that. I am finding it difficult to come to terms with no explanation. So be prepared that you may be none the wiser or informed if you do the test. I know that the surgeon was suggesting right Mx if I tested positive to a gene given my history (already had L Mx)  but I received my new diagnosis on right breast before the gene results cam back so it was a Mx anyway. I don't know if it makes a difference on type of chemo or not - although I would have thought that was more to do with type of cancer. For me it was more about risk for family members - son and cousins. It may not give you any answers, which is where I find myself now. I would suggest having the consult so you know all the parameters and whether you have to pay - and what a result will do for you: will it inform treatment or flag risks for family members. Then decide once you have all the info. It's another layer of decision and worry on top of everything else we have to weigh up with BC. I'm happy to answer any other questions if I can  and wish you well with the decision. Take care. :)
  • Hi @Sister, I have had an experience with a genetic researcher through my sister 3 years ago and a rare tumor she had in her ovaries.
    She did not have any cancer genes and apart from asking my history I was not tested.
    Unfortunately like you,we did not know any family history apart from our parents and an Aunt and Uncle which were not  Cancer related deaths
    They were not able to tell us anything because there was not a lot of history.
    She didn't pay ,the Randwick's Womens hospital in Sydney referred her to them.
    When I got diagnosed, my sister sent them an email with my diagnosis asking is this related, they said "unlikely,  however can they get access to my results" 
    I have mixed feelings about the whole thing , as it did not give us any more clarity and three years later I was diagnosed with BC which according to them is not genetic.