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Bloss
Member
5 years ago

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
 :) 
  • 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. 
  • 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
  • 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. 
  • 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.