parents backed out of BRAC testing..anyone else?

mnmom ~ I don't have experience with your situation, but I can see how the fear of even a possibility of losing their health insurance coverage, or having any hassle with it in the future if they were ever dx'd with cancer, could be a huge factor in their thinking on this.  And I guess I also don't fully understand why they even need to be tested if you have a very rare variant of unspecified significance.  It seems like whether your parents have the same variant might interest researchers, but it also sounds like having the testing and possibly testing positive might cause your parents a lot of anxiety and stress and is something they would prefer not to know.  And I'm not sure how it would impact any treatment decision(s) for you at this point.  It's late, and I apologize if I'm missing something that's obvious here.  But I guess I don't see the benefit of the testing to them, and I'm not sure I see any real benefit (beyond curiosity) to you.  Sorry if I'm missing something, and so sorry you're upset about.  I guess my only other thought is, is there a time limit as to when they can get tested?  If not, perhaps over time they will change their minds if it's something that remains extremely important to you.    Deanna 

Editing to add a link to something from the informational side of BCO:

http://www.breastcancer.org/symptoms/testing/genetic/pros_cons.jsp

I'm sorry you have to deal with the added stress of not knowing and wanting your parents to get tested.  I'm pretty sure that there are laws in place (certainly in the state of Washington and I think federal), which prevent health care insurers from discriminating based on genetic testing. That said, I know a couple of people whom I believe are at high risk for a BRCA mutation (based on strong family history) and they refuse to get tested because they don't want the information out there for insurers to find. People don't get tested for lots of reasons.

Have you met with a genetic counselor? If not, you should see if you have access to one that specializes in breast cancer mutations. Just because someone has a variation in a gene it doesn't mean that it has an adverse affect. I was lucky to have a very well informed counselor who's been doing this type of work for a very long time. He tested me because I'm young and an aunt and her daughter both had bc. I have 3 sisters, 2 daughters and my mom is still living. I felt it was worth knowing. I didn't have any of the known mutations in either BRCA 1 or 2. So I didn't have to ask my family to be tested.  That said the final report from the counselor was that it ws possible I had a mutation that was yet to be identified. There's so much about bc that we don't know...but that's another topic.

I would suggest getting a second opinion on your results and talking to your surgeon and/or onc to see if testing your family members would have any bearing or impact on your treatment.

Hang in there.

mnmom,

You said the testing wouldn't cost your parents anything.  There is a big cost associated with the test so who was going to pay?  If their insurance company was going to pay, that would be a big red flag to the insurer that BRAC may be involved (testing is not done on relatives unless there is a positive result somewhere in the family).

Not all insurance companies are ethical (Ha!!! an understatement) and an indication of a preexisting condition could cause problems in the future. 

 That is exactly why I resisted my sister's pushing for me or my daughter to be tested for the BRAC gene when I was diagnosed.  In my case, there is no family history of BC or OC and I didn't need any flags going up against my 20+ year old daughter as she went through life paying for her health insurance.

I agree about the insurance companies. To think this wouldn't come back to haunt you is to assume that they are ethical - like Sassa said - Ha! I would think that encouragement for extended family to be tested would mean siblings, cousins, etc. Not elderly parents. What's the point? My late daughter was diagnosed at age 31. Her doc insisted she be tested even in the absence of family history. Negative. Obviously her ins. co. already knew she had cancer, so no harm done. Now that I've been diagnosed, we do have a family history. My other daughter was recently rated for life insurance because of the strong family history of bc. And that's with negative for BRAC gene. Luckily, her health insurance is through her employer but that may not always be the case.

mnmom ~ I just want to add (since it was late when I posted last night and I wasn't thinking clearly), that there have been 4 known cases of breast cancer in my family -- my sister and 2 first cousins, also sisters.  The other 3 did have BRCA testing, as did 1 other cousin and an Aunt.  One of my cousins, the one who was the youngest when diagnosed (37), did have a gene variant of unknown significance.  The others did not.  When I was dx'd, because I was older than any of them at the time of dx, the genetics counselor at UCLA said that since I was the oldest of any of the 4 cases of bc, there was no need for me to be tested (although I would have been interested), and I wonder if there might be similar logic re. your parents -- that, because of their ages and the fact that neither has been dx'd with cancer (thank God), the chances of them also having the mutation (assuming it's even a cancer trigger) is unlikely.  Just one more possibility...     Deanna

mnmom,

Because of the characteristic of my type of bc, my age at diagnosis, family history,  risk factors, etc, I seem to fail into the catch all category of "cause unknown - may be something environmental."

 The only result for my daughter who was 22 when I was diagnosed is that her gyn immediately gave her a base line mammogram and she receives yearly mammograms (that her health insurance pays for).  The gyn also feels my BC is "environmental" and since my daughter shared my environment, she will keep an eye on her. 

mnmom ~ You brought up a very interesting point.  Prior to the baby boomer generation, breast cancer was such a hush-hush topic that, sadly, most of us have no idea if our grandmothers or great aunts may have ever been diagnosed with it.  My sister and I vaguely remember our maternal grandmother having some sort of mystery illness that no one talked about when we were very young, and we've since wondered if it might have been bc, although she died of something entirely different later in life. 

I'm also wondering if your parents, depending on their ages, just have a real discomfort level with the whole subject of C, which might be a hidden reason why they're just not interested in knowing anything more -- especially a test that would reveal a possible genetic disposition to developing it.

One more thought I had for you while I was just out walking... Do you think maybe they're afraid of just having any medical appointment and a blood draw -- assuming they're healthy and this isn't a regular part of their lives?  Perhaps if they need to have blood drawn for anything else in the future, you could ask if they'd be willing to have a bit more taken at the same time to be sent for the BRCA testing?   Just an idea...  Deanna     

Actually, when I went for BRAC testing because all the women on my father's side of my family had BC, the genetic counselor warned me that there are still concerns about privacy and insurance. Apparently, there is suspicion/concern that insurance companies are getting hold of that info and using it against people occassionally.  Consequently, when my tests came back negative for BRAC gene, but possibly positive for other genetic mutations, I  suggested to my brother that he not get it done (for his daughter's sake) until he is of medicare age (another 8 years).  I was not BRAC positive, so the info wouldn't really help me, or my niece yet. But, in another 8 years they may have defined more genetic mutations that mine falls into, and can check my brother/niece for that.  It made perfect sense to me not to mess with the possibility of messing up one's insurability (especially when self-employed!!!) until our whole insurance system is fixed, or you get onto a system like Medicare, that does not penalize pre-existing conditions.

Sue