more about the BRCA test

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ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I recently had a mastectomy for invasive early stage bc. I went to see a geneticist to find out about being tested for the breast cancer mutation. Although I wrote to the group before about the pros and cons of getting this test, I now have additional questions since I got more information from the geneticist: 1.) the geneticist assured me that she has never heard of a case of an insurance company discriminating against or dropping a patient based on a positive test result, but it is a little hard for me to believe this because as a practicing social worker, I have had many clients who were denied insurance due to being diagnosed with mild depression. Has anyone either experienced or heard about insurance discrimination based on a positive BRCA test result? I suppose I could tell my doctors that I don't want this information written down in my chart, but this does not seem possible since if you have a positive result, you would have to tell the insurance company in order to justify getting increased screening (see #2 that I am about to talk about). So this is my hesitation to get the test: about insurance discrimination. #2) My reason for wanting to get the test is because the geneticist told me if I test positive for the gene, my insurance will then approve additional MRI testing which would not otherwise be covered - apparently, if you have the gene, you are at higher risk for getting breast cancer a second time. I read on the ACS website that MRI testing is often considered more effective at screening breast cancer than mammography and is done in high risk situations, but not routinely for someone who has had breast cancer. But I had a mastectomy, so I'm wondering if I would have MRI for follow-up anyway? Does anyone know? I am very confused about the pros and cons of getting this test: on the one hand, I don't want to lose my insurance, but on the other hand, I want to take advantage of any additional screening devices I can in case I get another bout of this. What do people think? Also, are there are any other implications for treatment if you test positive for the gene? Ohilly

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  • If I test positive for the gene, on the suggestion of my onc. I will seriously consider a prophylatic mas. of the second breast AND a hysterectomy to protedt again ovarian cancer. Because there is a Ashkenazik Jewish component to this, there may be ways around publizing the results. My daughters all tested for taysachs. They did it through an agency that posted them a number, no name. If the test is pos. they look it up by number. If two jews are anticipating marriage they give their numbers to the screeners who look it up by number and tell them if it a good match. This same protection may be possible for BCRA testing through this orthodox agency. I will ask my daughters. Also, I think that the Protection for workers with cancer bill would have import on this also. I am only partially familiar with this bill, which my sister, an HR specialist told me about. I cannot be denied work or insurance based on previous cancer dx. I will ask my sister to look into the wording for BRCA mention. But there are horror stories out there. I was denied insurance once on the basis of...acne. Yep. The insurance said it was a previous condition and a pustule could become infected and kill me. I have it in letter form. I was glad to see the ruling giving that woman 9 million from the insurance company who cancelled her mid treatment. Guess there may be horror stories, but also some sharp teeth in the law.
    Good luck on your decision. It will take a while for my daughters and sister to get back to me as they all live far away. Maybe through your social work office you can check some of this out. Call a chasidic rabbi for the link to the Taysachs testers.
    It is ALWAYS good to get lots of info befoe deciding.
    love,
    Joyce
  • mssue
    mssue Member Posts: 242
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    Hey Chilly!

    Well I posted a couple of weeks ago about several things, including the testing I did back in 06, for BRCA1 BRCA2 genes. I got a call back on the BRAC2 about a month and a half ago(because they didn't have enough people in the study with the same results to give any answer)Anyway,I went in and talked to my counselor there after going through all of the different options we discussed ins. This is literally a preventative measure for a person who is caterogized a high risk patient. It cost the ins companies alot less to do preventative measures than a full blow case of cancer surgery and treatments...Insurance companies like Blue Cross Blue Sheild are great, maybe your counselor can help out in the way it is written up-believe me That does make a difference.

    Well here I am just chatting away,don't know if this helps,hope so...There is so much on ones mind when we are going through so many life changing events....Oh and by the way my BRCA2 came back positive I think my family history kinda sealed the deal (my Mom died w/ovarian cancer,and my Sister has had cancer 2 times the first time Cervical Cancer the second Ovarian,she is still with us but she has taken it all very hard)
    I am going to have the hysterectomy(sp) and I agreed to having a mamogram then six months later having the MRI then just keep repeating that I guess forever-but it does give a little peice of mind that if anything tryies to start it would be caught early--I was looking forward to being released from the onocologist my 5 year mark is comin up but they said that I should not ever be released...So I called my Sister and she just sent in some of her blood to see if she has this gene 2---It is important because we both have children and it is heritary,meaning my daughter should start having mamograms when she's around 25 and of course pap smears. It can also affect boys,My son is 25 while it might not be as many men with breast cancer it is still a possiblity and they also need to keep a check on their scrotum area...

    Wow did't mean to go so long but there is a lot to know about and it's nice to be able to share.

    Big Hugs 4 U
    Sue
  • cabbott
    cabbott Member Posts: 1,039 Member
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    I wonder why the insurance company would drop someone who tests positive for BRCA after they already have proven they had cancer. I have had both breast cancer and lung cancer and they haven't dropped me yet. I would do the BRCA test in a minute, but I just don't have the risk factors--no family history. But if I did, I'd be going for it so I could protect the rest of the family. Knowledge can be protection if folks want it. Mind you, THEIR insurance company might drop them if the problem runs in the family and they haven't gotten it yet, but I'm not sure that your test can be passed on to their insurance company without their consent and knowledge. If it did, I think a good lawyer could clean up for discrimination.