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Sister's avatar
Sister
Member
8 years ago

Genetic Testing

I've just gotten my referral for genetic counselling and feeling a bit miffed (my husband's annoyed too about the gap).  Although I've yet to discuss it with the counsellor, as I understand from what I've read, I will be out of pocket by thousands if I decide to go ahead with testing.  My sister got bc at 32 and died at 45.  I don't know what type of bc it was because there was no "type" then.  I only have one sibling who had cancer because I only had one sibling.  That makes it a clean sweep - all of my parents children have/had bc.  Has anyone else in the extended family close enough had anything relevant?  F*%k knows - the generations in my family are totally screwed (my cousin's grandchildren are older than me) and people didn't talk about cancer.
And, according to the onc, while he doesn't expect there to necessarily be a genetic link, it would have an impact on future treatment.

9 Replies

  • Yes @lrb_03 it is food for thought, I only needed to do it as part of my treatment plan and to put me through the public system as my Surgeon didnt want me to be $10,000 out of pocket for my recon, so it was good for that. Thing they said is 90-95% of Breast Cancer is random and not genetic. Mind you there are so many mutations they just haven't discovered yet that could be genetic and passed through. Not sure of a genetic test for Cancer in general, I think that's different to the BC genetic test. xx I agree just bad luck, there are zero common denominators and every single one of us here is testament to that. All the best x
  • Thanks @melclarity. I've always figured that I wasn't in a high risk group for bc. I went with Dad to his appointment with the oncologist,  and that was who suggested it. My guess around the thinking is perhaps one of the variations around increased cancer risk in general. To be honest, I think there's so many different cancers that I don't think there's anything there but bad luck. I'm interested in having the conversation and seeing where it leads. It's probably not going to make any difference for me, but if it's going to help the family, then I'll think about it
  • Hey @lrb_03 with the Genetic testing for Breast Cancer, they look at relatives who have had Breast Cancer or Ovarian Cancer. 
    • multiple close relatives with breast or ovarian cancer
    • a family member who developed breast cancer at less than 40 years of age and/or ovarian cancer at less than 50 years of age
    • a family member who has had both breast and ovarian cancer or more than one breast cancer
    • a male family member with breast cancer
    • a family history of breast cancer or ovarian cancer and Jewish ancestry.
    I get what you're saying too, as I had my Mum with BC, a cousin with Bowel Cancer, an Aunt with Thyroid Cancer and 3 male relatives with Prostate Cancer. They don't use those in the criteria for screening. So I all I had was my Mum being a first degree relative and unfortunately me having had a recurrence in the same spot :/ but that wasnt enough to get it for FREE. What a croc!!!! 

    Interesting too, on the Cancer Council website where the information was from, they had a calculator...hmmm I thought Id look at out of curiosity as if I were someone who hadnt had BC yet...interesting, the ONLY thing the calculator said as to why I would be a high risk of BC???? was if Im not in a healthy weight range. So that insinuates that anyone with a few extra pounds is at a high risk...crazy!!! ridiculous! Ummm guess they forgot the memo that I WAS in a healthy weight range pre both diagnosis Pfffft oh and exercised and ate a healthy diet....PFFFFFFT!!! 
  • Hi, @Sister. I've just had a referral to see a Geneticist through the public system, 3 years after my diagnosis, amongst many others, my father has recently been diagnosed with prostate cancer, and I then found out about another uncle with prostate cancer. That makes 4 out of those 5 siblings with a cancer diagnosis.  At this point, I'm going to find out if it's worth testing, there's no benefit to me at this point, but I do have a niece and nephew that may benefit from any additional knowledge. 
    I, too will have to think carefully about it from a cost perspective
  • Hi there @sister. I had no family history from nowhere not even a distant relative with a history of breast cancer only an uncle with kidney cancer and that’s it. Because I was triple neg and was under 50 I got the gene test for free through the royal Brisbane. Not sure if private health cover can cover any of it perhaps ? Otherwise @duxx1234 seems to be on to something with what she did. Might be a bit cheaper for you and I’m assuming you’d get some rebate from seeing a geneticist too. But it does suck doesn’t it. Financially it fucked us up too love along with many others on here. Big hug.  Margie.  X
  • @Sister I hear you, its beyond ridiculous!! I had Genetic Testing done in October 2016, I had a mother with BC a few other types of Cancer through the Family and this was a recurrence for me and still I didn't meet the criteria!!!! I was furious, it cost me $1,000 at The Royal Melbourne Hospital - Familial Cancer Centre. There are no rebates for it either, I also needed it for the next step in my treatment. It came back negative, so that meant their recommendation was based on my history/diagnosis that only a single mastectomy was required as the other breast is independent. So armed also with this, my Surgeon and PS both work in the public system as well as private, they were able to put me through Public for the mastectomy/diep flap recon with no out of pocket, but a piece to that puzzle was having the genetic testing done. It is crazy, the thing is there are so many other mutations they have not yet discovered, and seem to be equally as crucial in terms of genetics as BRCA 1 & 2. A long way to go I think. xx Melinda
  • @Sister @kmakm  I am waiting for my genetic testing to come back from the USA. I went to see a Geneticist here in Brisbane because of the prevalence of cancer in my family.  He referred me to a company in the US who sent me a kit. It cost $A423 and that includes testing for BRCA1 and BRCA2 and 30 other genes which could predispose us to cancer. eg, my mother died aged 49 from bowel cancer, her sister (my aunt)died at 10 years of age from bone cancer, my brother had testicular cancer at age 33 years and 5 out of 8 female cousins on my fathers side have breast cancer. My paternal grandmother had a mastectomy many years ago but lived til she was 90 years old. BC? I was the fifth grandaughter to be diagnosed in November 2017.  
    As I have two daughters and two little granddaughters I wanted to have the testing done so that if there is a rogue gene, they will be aware of it and perhaps be more vigilant with their health but the testing may show nothing.  I’m under the impression that Medicare only covers you for 9 genes plus the BRCA1 and 2?
  • I'm just having a rant as I've yet to see the counsellor but it seems pretty clear what the guidelines are (unless I can invent some Jewish ancestry). There's no way I can afford the test costs and while I'd love to be proven wrong and a nervous Nellie, it would not at all surprise me to find there's a genetic link. But I know there's some on this site who have much more compelling evidence of possible links and it hasn't shown up.
  • That's really shitty, I'm so sorry to hear that. Bill shock eh? And more harsh rules about what does and doesn't get subsidised.

    Unfortunately I'm unable to help. My deceased sister had it done three years before my diagnosis and no new tests had been developed in that time. Free of charge, I had a long phone conversation with the genetic counsellor from the Peter MacCallum Familial Cancer Centre who then sent me a four page report. K xox