Hi everyone, I’m new to the group :) . I’m 48 and I was diagnosed with high grade DCIS in March 2020. I had surgery and I’m just over half way through Radiotherapy. I am trying to decide whether to have private genetic BRCA Testing (Medicare advised they won’t test due to no prior family history of breast or ovarian cancer- mum did pass away at 35 of cervical cancer but apparently isn’t hereditary). I know the results can be inconclusive, but just wondered if anyone has undergone testing and if they could give any insight or advice. My specialist has also discussed the possibility of me taking Tamoxifen preventative cancer treatment. I am a little concerned of the side effects, In particularly clots in the lungs and legs. Just wondered if anyone out there has any advice. Thanks :)

@ddon I didn’t want to pay for it cos I thought it was $5000, but then they told me that test was different (oncotype DX) and this one was free. I was quite clueless about them all. Either way I wouldn’t have really had the money as I’m unemployed. Id already had a double mastectomy, so in terms of chemo/radio they said it wouldn’t make a difference. But they did say it would be good to know for removing the ovaries later, and also for my daughter and sisters. I wonder why I did it through blood and you through saliva

Thanks everyone for your help and advice, it is much appreciated, and gives me something to think about :) I have another appointment with my specialist tomorrow and will discuss it again with her.

@Bloss good luck in your decision Xx

There is a blood test that checks for the BRCAs and a few other very rare genetic conditions (eg Li Fraumini). If you fall into the Medicare defined parameters you can get it done cheaply or no cost.There is a saliva test that checks for a panel of about 60 genetic mutations (not the BRCAs, and not just breast cancer), such as the one I have, CHEK2. This can be done in Australia but such is the demand, it takes ages and costs a lot of money. I had it done privately for about $400, plus consultation fees. It was sent to the US simply because they have a lot of laboratories doing it there. It takes 4 - 6 weeks.This was 18 mos ago so things may have changed since then.

DCIS genetic testing and Tamoxifen

ddon
Member
5 years ago
I did genetic testing - I went through the Brisbane clinic then the test was from a Californian company. It was $480 Aus for the test itself and $570 for my clinic appointment which was via Telehealth. I do have a family history but I didn’t get anything back from Medicare.
Bloss
Member
5 years ago
thanks :)
ddon
Member
5 years ago
Also, I didn’t add that I am 47 and just started tamoxifen two weeks ago. I understand your concerns over side effects - it’s too soon for me to say how it is (lots of other ladies on here have been on it for years) but for me I don’t really have a choice so just hope I can cope ok. I can’t say I know much about it from a preventative perspective - just from a recurrence perspective. Someone on here can probably advise on this.
FLClover
Member
5 years ago
Hello. I don’t have any family history, but the test was offered to me for free because I’m 39 and got multifocal and bilateral bc, so I accepted to do it. App via Telehealth took about an hour, got asked a lot of questions about family, medical conditions etc and got explanations on different gene mutations. Next I did a blood test and that was it. Still waiting for results as they take 6-8 weeks. Am really hoping it’s negative. Apparently it doesn’t change much in terms of treatment. Good luck in your decision (I wouldn’t have paid for it) Xx
ddon
Member
5 years ago
I did a saliva test, no blood test. I was willing to do it and pay for it because I have 3 daughters and two sisters and I feel they need to know. Also, if I have a gene mutation my surgeon will take off my other breast and ovaries out - he is not keen at the moment! I am expecting my results maybe this week - I was told a 4 week turnaround.
FLClover
Member
5 years ago
@ddon I didn’t want to pay for it cos I thought it was $5000, but then they told me that test was different (oncotype DX) and this one was free. I was quite clueless about them all. Either way I wouldn’t have really had the money as I’m unemployed. Id already had a double mastectomy, so in terms of chemo/radio they said it wouldn’t make a difference. But they did say it would be good to know for removing the ovaries later, and also for my daughter and sisters. I wonder why I did it through blood and you through saliva
ddon
Member
5 years ago
It is ridiculously expensive. Especially that initial consultation- actually, my surgeon just told me to have it and made the appointment for it; I hadn’t really thought about it prior to that. I guess a blood sample wouldn’t work since it’s an American company - I don’t know how many places actually do the test and why my clinic went for an overseas place.
Anyway, it’s good you didn’t have to pay for it. Good health care in this country should never depend on your financial situation, and fortunately it mostly doesn’t.
FLClover
Member
5 years ago
@ddon

https://www.bcna.org.au/news/2017/10/bcna-welcomes-new-medicare-rebates-for-genetic-testing/

Just as I was told, women who are considered at higher risk get a rebate, and age is a factor. I also read in another article that getting it in both organs of a pair (bilateral) is a factor. So is family history though, so not sure why you didn’t get the rebate. Look into it. I did also read that only a few places in Oz do it. I did mine at RPA in Sydney. But you’re right, the costs of this mofo bc are already so high, women shouldn’t have to pay such ridiculous prices for these services.
Bloss
Member
5 years ago
Thanks everyone for your help and advice, it is much appreciated, and gives me something to think about :)

I have another appointment with my specialist tomorrow and will discuss it again with her.
FLClover
Member
5 years ago
@Bloss good luck in your decision Xx