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New to group

SusanAmessSusanAmess Member Posts: 5
edited May 2012 in General discussion

Hi all, I have only just joined the group.  I'm 33 years old and was diagnosed with triple negative BC in February, a few weeks after moving to Sydney with my family (2 kids - 6 & 3) from the UK.  Talk about bad timing!  Since diagnosis I have also had genetic testing and it turns out that I have the BRACA1 gene mutation - probably not really a surprise as my sister died from breast cancer 5 years ago at the age of 31.

I am 2/3rd through chemo, then I will have a bilateral mastectomy, and truth be told, I have found the treatment so far easier than I thought I would.  But mentally, it's tough - especially as we are new to the area and don't have a big support network. 

Are there any other triple negatives or BRACA 1s out there?  My head is just swimming as there is so much to consider - I need to have my ovaries/tubes removed as well as make a decision re reconstructive surgery, and seemingly there are lots of menopause related issues to take into account as well.  I am definitely in need of any friendly advice you have to help get me through this! 

Sue x

Comments

  • such is lifesuch is life Member Posts: 93
    edited March 2015

    Hi, I was diagnosed in March and am booked to have bilateral mastectomies on the 23rd of this month, I do not have my genetic testing until the 1st of August as had to postpone, it was to close to surgery date, they didnt do further testing on my core biopsy so I have to wait until final pathology after op for my receptor statis, I am from victoria, so a little far to catch up but I am sure you will be able to find a bc support group close to you,  and I know it sounds a little strange but maybe meeting new friends through that group will in the end turn out to be a blessing, making a positive however small, out of this bloody awful place we all find ourselfs in, Happy to email anytime xx

    Cheers Narelle

  • LeeSLeeS Member Posts: 128
    edited March 2015

    Hi there. Sorry to hear how rough you've been doing it since in Australia! I was diagnosed 5 years ago, aged 37, triple negative. I have 2 young boys and live south of Perth. I'm waiting for my BRCA1 test results now...had bloodtest about 5 weeks ago. Try the facebook group Perth Previvors. I met a lovely lady who introduced me to this group just last weekend. I've only had a few brief reads but I have a feeling you'll get all the answers and support you're looking for there. It doesn't matter that you're not from Perth...the advice is obviously the same:-) Message me whenever you like also. Lee. X

  • Smiley_30Smiley_30 Member Posts: 83
    edited March 2015
    Hello, welcome to Sydney!! Not exactly the start u needed though...
    How r u feeling? I'm in Sydney, triple neg, 2 girls (4,11) diagnosed 7/12/10, I've had left mastectomy, 6 rounds chemo, I was 30 at the time of been diagnosed.
    I haven't had the genetic testing done, but it's something I plan on having done very soon, even though no BC history in the family, I have 2 sisters & daughters so i feel it's a good idea for me to check.
    Take care,
    :)
  • ShazinozShazinoz Member Posts: 307
    edited March 2015

    I have my genetics appointment the same day as you - 1st August. I don't know if I have the testing done that day or if it is to see if I qualify to have the testing done for free (Ihave breast cancer on both sides of my family), and both my surgeon and oncologist said I need to have the testiong done, but if I don't qualify I can't afford the $2,500 to have it done. I am sure I will qualify though.

    I will be thinking of you as well on 01/08 while i am seeing my geneticists (my appt is at 11am).

  • such is lifesuch is life Member Posts: 93
    edited March 2015

    I live in  central victoria, not sure where you are from, will be interesting to see if we are in different states and have the testing done on the same day, whom gets their results back first, sort of like a mini state of origin for genetic testing lol

    Cheers Narelle

  • ShazinozShazinoz Member Posts: 307
    edited March 2015

    I am in Canberra, ACT.

    LOL, I like the minis state of origin of genetic testing. I am not eve sure if I wil lbe having my testing done that day or not, becasue they will only do it is I qualify (have enough of a family history to do it for free, because I can't afford the $2,500 otherwise). My oncologist and breast surgeron both think I am high risk for the gene and both sent me to the genetics clinic for testing, so it will be interesting to see if they think I am high risk and warrant testing. If so I assume they can do it on the day.

  • FDFD Member Posts: 139
    edited March 2015

    Hi Shazinoz

    I was also told $2500 for genetic testing also if I don't qualify and I am in WA. I only have it on my mothers side, my dad was adopted so don't know the family history there. It makes me furious that family history is a definite factor - what else should they need to qualify??? When I spoke to the lady who called me she wanted to wait until after the results of my lumpectomy came back to help determine if I would qualify. I have confirmed DCIS and she is going to call me Wednesday. I might enter in this mini state of origin and see if I can win. Although I don't like my chances we are always behind over hear :). Mind you if my pathology comes back only DCIS after my mastectomies with clear sentinel node biopsy I am going to feel like a winner regardless. My surgeon told me that if I had the gene he recommends bilateral mastectomies from age 35 yet if there is no cancer Medicare doesn't cover..... How the hell are these girls supposed to sleep at night if they can't afford that. I know I couldn't afford it and certainly couldn't sleep. Fingers crossed you qualify I'm sure you have paid a dollar or two in taxes.

    Lara xx

  • ShazinozShazinoz Member Posts: 307
    edited March 2015

    I was told that medicare will cover my other mastectomy, if I have the gene or not, it just means I have to go on the general waiting list instead of the faster one, so may have to wait a year to get it done instead of a month.

    As to the testing Medicare only covers it is they think you have enough of a family history to warrant the testing.

    You are right, I have paid my taxes for years, and have a family hisotory, and need to know this (I need to know if I need to have my ovaries out, or am at risk of ovarian cancer too (the signs of that are SO VAGUE it is often too advanced by the time they find it), if I get the testing done and it is positive, I willhave my ovaries out ASAP, as well as the other boob off).

    Good Luck with your journey, into BC and the wonderful world of genetics and medicare funding.

     

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