Forum Discussion
DCIS genetic testing and Tamoxifen
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
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15 Replies
- Thank you, that’s good they keep in touch too. I have started the tamoxifen and so far I haven’t been to bad😊.
- I did genetic testing which was funded as I had my mother and aunt who both had breast cancer. It was negative. They take extensive family history and a blood test. I chose to do it not only for myself but the implications on my sister's and nieces if it were positive. Also an advantage is that they keep in touch annually and if there are any new genes identified for breast cancer they notify you if it affects you.
I have also taken Tamoxifen for 18 months now. Side effects mainly were hot flushes and dry skin and some mood swings. . Side effects seemed to settle after the first year..
Good luck to you - Thanks @kmakm that def clarifies things for all of us 🙂
- 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. - Thanks :)
- @Bloss good luck in your decision Xx
- 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. - @ddonhttps://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.
- 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.
- @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
