parents backed out of BRAC testing..anyone else?

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1st I am really tired so maybe it won't bother me so much tomorrow.

I had BRAC's on Nov 09 one had an unknown variant only 5 people had ever had it, they did not know what it was & further testing did not clarify it. Extended family testing was encouraged. It could resolve nothing or something only the 1 part of the 1 mutant gene would be tested further.My parents were set up with all the contact info etc, it kept getting put off til it fit their schedule.It was not going to cost them $. They told me they were going to do it ....I just asked if they had gotten the results back & now my mom says they did not & will not cause her doctor said it could effect her insurance if a C gene was found & so being the dutiful patient she /they will not be getting tested. She always follows doctors' orders to a T.

I was told over & over that the testing is private. That an insurance company can not hold results against you etc. Which is right?

My mom was such a supportive person through all my BC. I do not feel like I have the right to be angry with them, I feel guilty for that too.

In the midst of this an ovarian cyst appeared & because of the questionable results from my test, The unknown of my folks, the issues with tamoxifin, & I did not need the parts... I had a total hysterectomy Feb 2010. A decision that I never questioned, until now.

There is 1 very distant relative on each side of the family 1BC & 1OC so it could have cleared that up. Now if there is any future C issues I feel like the scales are tipped against me.

It just feels like they played me. As long as I did my part then they could back out after. It just has upset me so that I do not know what to say to them. I feel so let down.

Thanks for letting me vent.

Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2010

    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

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited April 2010

    Hi Nmmom

    Im sorry you are having to go thru this, I can see how you would be hurt and angry that your parents refused to go get tested, not sure why your moms dr. said insureance would find out because like you said it is confidental, and as dlb said maybe your parents dont want to know and it would cause a lot of anxiety, try not to be angry at them im sure they are just scared- that out of the way, I also had a varient of uncertain significance, my daughter had breast cancer before me at the age of 30 she wasnt tested at the time because she couldnt afford it, however, when i was dx with bc 2 years later i was tested and they also wanted to test my daughter for free she had the test done and hers came out the same as mine, now we know, but it hasnt done a bit of good, it really dosnt change things or make it better so i honestly see it as a waste of time, I hope this helps you, try not to dwell on it,because in my opinion it dosnt really matter- we are all here for you if you have any questions-(((((((((hugs)))))))))))

    debbie

  • codavis
    codavis Member Posts: 122
    edited April 2010

    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.

  • Jelson
    Jelson Member Posts: 1,535
    edited April 2010

    I am so sorry you are dealing with this anger and sense of abandonment - perhaps another issue your parents are dealing with is guilt - they would rather not know if their genetic legacy to you in any way, caused your breast cancer. and yet, that conclusion would be speculative at best. And as is pointed out by the previous responders - the results may have no bearing on your treatment. 

    Julie E

  • Sassa
    Sassa Member Posts: 1,588
    edited April 2010

    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.

  • mnmom
    mnmom Member Posts: 2,068
    edited April 2010

    Thank you for responding....I do realize that further testing could be just altruistic.It could also open a window to an answer. People seem to be ok with drug research why not genetics testing ...for an answer to this C.

    My folks & I had talked about all of this before hand they know I would never blame  anyone (other than myself) for my BC. That I still have 1 B to consider & 4 kids of my own not to mention 3 nieces. It just seems so ignorant not to do what you can & frustrates me that this is something they now feel they can not, and did not tell me earlier. I will not dwell, had just found out & knee jerk reaction. Did not even talk to them as I was informed via email. Only place I could got to get it out & I do thank this site.Smile

    That said, I can not tell you how crappy it makes me feel to post this as I see several more new sisters are chiming in looking for help. I wish that there were more answers for us all. Thank you all again for your insights.

    Sassa, I was writing this when you posted so to answer you. I tested with the unknown variant & my folks had an offer from the test site to do the testing for free. Blood draw & counseling not included...we had that covered for them. My thought is the more you know the better. I had asked my onc about the testing when I got the DX & was told ‘not necessary' then after surgeries & treatment he said he thought that it was important that I get tested. OK I have issues some medical professionals! Guess I am sick of people, no matter whom changing their minds about stuff. I had so many real crusty experiences during my BC that it sounds like a soap opera.

    I am glad that you are happy with your decisions. May I ask ..Doesn't the fact the your daughters mom having had BC already give them cause because of the close relative association?... Your daughter already has that leg up on proactive monitoring of herself since your DX. I was bc ingnorant.

    May a cure be found!

  • Alpal
    Alpal Member Posts: 1,785
    edited April 2010

    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
    mnmom Member Posts: 2,068
    edited April 2010

    Parents then siblings only was offered since both my parents are alive it is just a blood draw. It get very specific but the %'s change with each diagnosis & it goes through the family tree that way Also I had BC way back one one side of my family & OC way back on the other so it could give the clue as to which gene was being passed & since OC can be passed through the father My children could pass it to theirs.

    Life insurance always a good idea wow did I get the offers in the mail after my DX.

  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2010

    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

  • Issymom
    Issymom Member Posts: 264
    edited April 2010

    mnmom - I was diagnosed in Nov 2009 with TNBC.  My surgeon suggested I test for the BRCA gene mutation even though I only knew of my paternal grandmother having BC (she died in her early 50s).  Surprisingly, I tested positive for BRCA1 mutation.  We met with a genetic counselor and decided to have one of my parents tested to see which branch of my family tree the mutation came from.  My dad tested positive (we were sure that it was his side as my mutation came from Norway).  We felt it was important to know this so that we could inform everyone in my family that could also have the mutation.  Of course, once we inform them it is their decision but we would feel horrible if we didn't tell them and they came down with BC or OC.  My sister tested positive and I have a male cousin who will test in the near future as he has a daughter.

    As for the insurance issue, on May 21, 2008 the Genetic Information Nondiscrimination Act (GINA) was signed into law.  This legislation is federal legislation that prohibits health insurance and employment discrimination on the basis of genetic information or a genetic test result. The health insurance protections offered by GINA took effect in May 2009, the employment protections will be fully realized in November 2009.  Maybe your parents doctor is not aware of this information.  You can find more informaiton on the FORCE website (anyone who is BRCA+ or has a strong family history of Breast or Ovarian Caner should check this site out).  The site is http://www.facingourrisk.org/.  More information on this law is on their site at http://www.facingourrisk.org/TTInc/viewpage.php?url=.%2Ffinding_health_care%2Finsurance_privacy_issues.html&needle=genetic+discrimination+law

    I hope this helps you.

  • Sassa
    Sassa Member Posts: 1,588
    edited April 2010

    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
    mnmom Member Posts: 2,068
    edited April 2010

    I have already informed all of my family that I chose to have the tests. That I have the results & if they want to know or want their drs to know I would be glad to send reports to them & share what I know ...unfortunately I do not really have any info other than I have a mutation. I can not even offer the possibility of which C it could be. I have also encouraged them to take 'care of themselves' since my dx.

    dlb823 Thank you for sharing. I appreciate all the info & support here. It just amazes me the similarites of stories or peices of them. What a great place to connect with people who can relate & are so willing to share their stories with each other. what a great group of people here.

    izzmom, Thank you for the info. ? were you tested before your surgery? Glad you told your relatives. I know that I never thought about BC for me before I found a lump at 47 the no family history. I did not know that my Dads' Aunt had it she died 40yrs ago & no on ever said it was BC to me.

  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2010

    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     

  • Issymom
    Issymom Member Posts: 264
    edited April 2010

    mnmom - I did get tested before surgery and decided to have a bi-lat instead of lumpectomy.  The risk of future BC was too high for me.  After chemo, I am glad that I did it as I don't want that again.  As it turns out, after looking into our family history we found out that my paternal grandmother's (who had BC) two sisters also had cancer and died in their late 30s.  No one is sure what cancer it was but are pretty sure it was ovarian cancer (women didn't talk about these things).  Also, their mother died from ovarian cancer in her 80s (I thought she died from old age).  The good news about my BC is that I have been very open and honest about it and now our family knows about this risk!  I was fortunate to have caught it early through a routine mammo but if they had changed the guidelines for screening to 50 for non-risk women, I would not have caught it until later and the prognosis would not have been as good.  Knowledge is power.

  • mnmom
    mnmom Member Posts: 2,068
    edited April 2010

    Deanna, both my folks have had non related C's & know many BC & other C people. They are not "afraid of needles I have had some time to think & I wonder if maybe it is not their grandchildren they fear blaming them cause they know it would not be me.

    I have a real discomfort level w/C ?  I say gotta do what ya gotta do.

    Issymom, Yes, knowledge is power. Thank you for sharing!

    It is a wonderful thing that so many people are not so uncomforable that they can share & help people through the endless issues. Thank goodness we are out of the dark ages.

    I am going to try & put this issue on the back burner with my folks for now & see how that feels.

    Can I say Thanks again? THANKS!!!!!!!!!!!!

  • moogie
    moogie Member Posts: 499
    edited April 2010

    The only way I would get tested myself would be totally anonymously and pay out of pocket. The " its not legal to use this test against you" insurance wise is a nice idea, but concrete information like a test such as this is dangerous info. I was advised by a lawyer and several genetics counselors that the law is in place but  there is no guarantee your rights will NOT at some time be violated. Then you would need a court battle, and have to prove w/o doubt that was the reason you were denied coverage. This is not easy to do and would take time one may not have if ill. Since I was self-insured it was not wise for me to take the test.

    Moogie 

  • 2z54
    2z54 Member Posts: 261
    edited April 2010

    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

  • debbie6122
    debbie6122 Member Posts: 5,161
    edited April 2010

    After posting last night it got me thinking, every one on my dads side has had cancer, no one on my moms side, i was dx 2 yrs ago, my daughter almost 3 yrs ago,  and a first cousin on my dads side has all had BC, my dads 2 brothers died of stomach cancer and esopogus cancer, both of my dads sisters have had lung cancer, and 1 has brain cancer as well. I also had lung cancer back in 03 at the age of 46- I having a rare mutation of uncertain significance and my daughter does too, but on one else has been tested, my dad had prostate cacner but otherwise pretty healthy,so im assuming it does run on my dads side, I had to pay for my testing but since my daughter had bc before me they offered to pay for hers, but they never offered to have any of my other family tested??? Hmmm!  Im concerned that it will effect my 2 granddaughters when they are older too, but this is different than having the bracca 1 and 2 where some woman who have that gene would get a MX beforehand, but in my case or in the case of any one else having a gene of uncertain significanse they havvnt quite figured out what to do with us yet, and i may never know, so i guess knowing still dosnt help, its all so confusing....

  • mnmom
    mnmom Member Posts: 2,068
    edited April 2010

    I had a right MX only... so there is still the 'left' issue. It is so interesting the different info people are given by their genetic counselors. My moms side has only 1 OC & 1 melanoma, My dads side had the renal, skin, abdominal(unknown origin), & 1 BC.

    My Onc told me they were all of no significance/relation to my BC. HMMMM?

  • Pat634
    Pat634 Member Posts: 271
    edited October 2010

    It might just be they dont want to know or maybe would feel responsable somehow if they were tested and it showed that they carried the gene.  Trying to figure out the motives of others, even our own family members, is sometimes impossible.

  • mnmom
    mnmom Member Posts: 2,068
    edited May 2010

    Thanks Pat634, I have no choice but accept their decision. I can understand if it is the insurance....It still bothers me a bit but since as I said earlier I think I got so mad cause it was like the doc situations etc flip flopping on diag & treatments etc. It felt 'wrong' to me ( and I can not explain that). I have not found anything about BC that is not frustrating. I do not like not having answers....

  • NSWTD
    NSWTD Member Posts: 210
    edited May 2010

    The genetics counselor I met with says that with the passage of GINA that insurers may not discriminate against you based on your results, BUT that is only with regard to HEALTH insurance.  There still could be discrimination based on Life ins or disability ins, or long term care ins.   It is very unfortunate this could be true, but I have not yet decided on my own genetic testing for the very same reasons.    I have no children though, so my situation and not getting tested is not a potential risk to others. My mom is 80, my two sisters have zero probs and I was diagnosed at age 53.   They say the chance of me testing pos is very, very slim.  

     I go back in July, I may decide differently, but i am leaning to no test . 

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