edited November 2019 in Newly Diagnosed

This thread has been created as a place for women to share their experience with BRCA1 and BRCA2 testing. Please feel free to share.


  • I am a BRCA2 carrier.  I have assumed my mother was a carrier as well, as she had breast cancer in her 50’s and is no longer with us.  It is amazing and good to hear that Vicki's Mum as a carrier has up to now never been diagnosed with breast or ovarian cancer.  It is reassuring to hear about this as I think we forget that being a BRCA gene carrier, only increases your risk, it doesn’t necessarily mean you will get cancer.  My daughter is also a carrier and she is pleased that she has been tested and even though she is a bit challenged with the idea that she has the gene mutation, she feels that it gives her the opportunity to have regular tests, information regarding the gene mutation and power to manage her own health outcomes.  Vicki, did your sisters that have had preventive surgery, feel so much better?  My sister is also a BRCA carrier and she has had the preventive surgery and even though it was a bit tedious and took a while to have the preventive surgery she feels so much relief that she has minimised her risk of getting breast or ovarian cancer.

  • I'm off to my local hospital in Launceston TAS in an hour for an online consult regarding genetic testing. I did my genogram (family tree) over the phone with a counsellor from Hobart yesterday - I was sent paperwork to fill in but was slow getting it back so they rang me to see if I needed help.

    I'll keep you posted on what happens in the consult today.


    Best wishes


  • Consult all done, we went through my family incidence of cancer (a few different types unfortunately), what testing could reveal and the pros and cons for finding out.

    For myself I feel I am being monitored and tested enough to be proactive regarding any further incidences of cancer, I've learned to listen to my body and be assertive if I feel something is wrong. The testing will be more about finding out if there is anything more my family needs to be doing.

    I had a blood test after the consult and I should know the results in mid December when I go back in for another consult.

  • My grandmother died of breast cancer, but before that there was no record.  My mum was diagnosed with breast cancer 2 years ago and then soon after that was diagnosed with ovarian cancer so immediately the red flags went up.  My mum was tested and carries the BRCA1 mutation.  I have since been tested and also carry it.  I have also been diagnosed with ovarian cancer.  I am also due to have my breast preventative surgery next year once my treatment is finished.  It appears prior to my grandmother that it has come down through the male line.  I just wish me and my mum had found out much earlier.

  • Hi Neigh 153

    I'm curious about the preventative breast surgery. Is it covered by medicare, what do they take out/leave? I'd like to have everything out and then implants but not sure if that is what they do.

  • Hi Rachel,

    Just in regards to your question about preventative breast surgery.  I decided to have a preventative double mastectomy this year after firstly being diagnosed with the BRAC1 mutation and having ovarian cancer diagnosed in Jan 2015.

    I have spent this year completing the process, it has been a long journey but am thankful for the peace of mind it has given me.  In my case I decided to go privately and therefor it was a very costly.  I did have the option to go through the public sector but was on a waiting list.  Due to my history , I didn't want to wait for surgery.  It is my understanding  the procedure if I chose to go through the public sector that it would of been completely covered .

    Briefly in regards to what they took, I chose to have everything removed including my nipples.  I wanted as much breast tissue removed and couldn't see the point of keeping them.  I chose to have the reconstruction done with implants .  So my journey consisted of 3 surgeries. The initial surgery was the mastectomy with the start of the reconstruction process with the insertion of the expanders.  I then had them filled my by surgeon until the got to desired size.  Then I had surgery to remove expanders and put in the implants.  My last surgery was to have my nipples reconstructed.  I am now waiting for them to heal and then I  can then have the tattoos done to complete my journey.

    I hope you don't mind me saying but if I could give you any advice it would be  do as much research as you can ,talk to other women about there experiences look at lots of pictures.  Talk to your GP, breast specialist, oncologist and plastic surgeons as there are many options out there and many procedures and ways to do it. I Hope this has been a little helpful , happy to answer any question at all.

    Wishing you all the best

    Kellie x

  • Thanks Kell

    I am only starting to think about this, I might feel more urgency about it depending on my test results. I didn't realise it had to be done in multiple surgeries so thank you for that.

    Kind regards


  • Hi all

    I got my results from the genetic testing. I don't have any known genetic mutations (BRACA 1 & 2) and no sign of any other syndromes which is great news for me and my family. A very welcome Christmas present.

    Best wishes


  • Rachel -

    Hello - I just read your post from 12/25/2016 - congratulations on being BRCA free. I am awaiting the results of my Dec 3, 2017 test. My sister is 1 and 2 positive (3/2015). I don't know why I was not counseled to have this test immediately. Be that as it may - I was diagnosed 10/13/2016 and have been in treatment ever since including surgery. Work, doing well. Platinum resistant/refractory so will begin avastin in February. Keep writing. Sandra

  • Hi everyone,

    I'm not sure if this is the right place to be asking my questions so if it is not, please kindly let me know and I will remove it.

    My Mum was diagnosed with ovarian cancer in 1988 when she was 28 years old (She is a survivor - praise the Lord). At the time she did not have any generic testing done.

    I'm now 37 and have beautiful 20 month old twins and my GP has mentioned me getting some genetic testing done, though she doesn't recommend it. Without having any knowledge on anything, i feel like i would like to know more but I don't know where to turn.

    I'm wondering what people's thoughts are on here, what options have been considered for those who do have daughters.

    Thank you everyone in advance.


  • Hi Mel

    That’s great news that your mum is a survivor. I have had genetic testing done and it’s easy to do. They also provide you with genetic counselling should you test positive. I have a daughter and 2 sisters and 2 young nieces. I wanted to know so we could make sure that we were well informed and could ensure that we started testing and being mindful of signs and symptoms. Lucky I dint test positive so we have been advised that my family now have an increased risk but only slightly.

    maybe you can chat with the support nurses associated with this page I can find the details for you. They are a great support they will be able to give you details of where to go etc.


  • Here Is the support nurses. Contact details.

    If you’d like to give the helpline a call on 1300 660 334, our nurses can assist you on what do. Alternatively, you can email us at

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