The Fun Keeps on Coming

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smithlme
smithlme Member Posts: 1,322
edited June 2014 in High Risk for Breast Cancer
The Fun Keeps on Coming
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  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    I saw my Onc on Tuesday to get my final pathology report from my second Mastectomy I had on April 22. Because it was early DCIS there won't be any chemo and since I have no breasts, no Tamoxifen. Because I want to do everything I can to live a long, healthy life, I had a bone scan today and will have all my reports re-read and get a second opinion on May 21. I should get the report from my bone scan within a few days.

    I also requested genetic testing since there's so much Cancer in my family, mostly from my dad's side. The woman from the Genetic Department called today because she pulled my record herself, due to my recent surgeries. She did my interview on the phone so I wouldn't have to drive into their facility. By the time we had gone through all the family history, she was quite concerned. Well...DUH! My paternal Grandmother died from BC, my sister was diagnosed with BC at 36, our Dad has had colon and kidney Cancer and I've been diagnosed twice, with two primaries and one was a triple negative. Because I have two daughters and three Grand-daughters, I want to know if I carry the gene. I now have an appointment on Monday to have my test and the results can take 4 weeks. If I have the gene...I will do whatever I have to to give myself the best chance of survival.

    Does this Merry-go-Round ever stop??? I'm hoping I just come from a long line of "flukes" and the test will come back negative...

    Linda

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  • AnneW
    AnneW Member Posts: 4,050
    edited May 2008

    Linda,

    At some point the merry-go-round at least slows down a little, so you don't get as dizzy.

    Genetics testing is appropriate. I just feel there are other genes out there that haven't been identified yet. More of us could be positive than we think.

    There was a good bit of cancer in my family, but both my first cousin and I are BRCA negative. That's better for our families, but regardless, we all do whatever we can to have the best shot at a longer life.

    Hang in there. Two primaries is a bitter pill. I've been there, too.

    Anne

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  • otter
    otter Member Posts: 6,099
    edited May 2008

    Linda, I was referred to a genetics counselor by my BS in March '08.  She saw that I had a "moderate" history of BC in my family.  The counseling session was very valuable--I went in-person, after submitting a long family-history form in the mail.  The counselor entered the data into a computer program and came up with a number that was the likelihood my BC was related to a mutation in BRCA1 or BRCA2.  In my case, that likelihood was, at most, around 5.5%.   To my astonishment, my health insurance covered the test (and the counseling session); fortunately, the test came back negative for BRCA1 or BRCA2 mutations.

    So, stay hopeful that the odds, for once, are against you and you will get the same negative result I did.  (Sometimes we don't want to win these lotteries!)  The good news is that the test did not take 4 weeks in my case.  I had the blood drawn on a Monday morning, and the counselor called me with the results exactly 2 weeks later.

    otter 

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  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    I believe that there is some genetic conection to all bc. We have only identified a few of them and one day all treatment will be linked to which gene is responsible.



    Right now I am waiting for the results of a p53 gene test. My 16 year old daughter died of rhabdomyosarcoma, which is linked to this gene, and my mother, aunt and I have bc.



    Even if genetic testing results won't change your dx or tx, I think it is an important contribution to the future of cancer treatment.

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  • pip57
    pip57 Member Posts: 12,401
    edited May 2008

    I believe that there is some genetic conection to all bc. We have only identified a few of them and one day all treatment will be linked to which gene is responsible.



    Right now I am waiting for the results of a p53 gene test. My 16 year old daughter died of rhabdomyosarcoma, which is linked to this gene, and my mother, aunt and I have bc.



    Even if genetic testing results won't change your dx or tx, I think it is an important contribution to the future of cancer treatment.

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  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    Yesterday I met with the genetic counselor to go over our phone interview and to have my blood drawn. She had put all of my family history into the computer and it shows I'm at 67% for BRCA1 and 23% for BRCA2. She personally walked me down to the lab, stood by me as they drew my blood, put my bar code sticker on the vial and took it to FedEx to be over nighted to Salt Lake, so it would be there this morning. I have an appointment with her on June 2, if the results are back by then.

    We spoke for quite a while about what all this means, in terms of my family and health. If I test positive, I will have a full hysterectomy. If it's positive it will answer my questions as to where this Cancer came from, twice. If I test negative, I will live my life wondering when/if/where it will show up next...

    Linda

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  • otter
    otter Member Posts: 6,099
    edited May 2008

    Linda, unless something happens to that FedEx plane, your results will be back by then.  Wow. Those numbers are pretty scary, right?  But I guess you knew they would be fairly high.  At least there are things you can do to reduce your risks, if the test results come back positive.

    As for the quote from Charlie Brown--no, the answers aren't in the back.  And, these aren't multiple-choice questions we are facing, either.  Sometimes it's an essay test, with no obvious "correct" choice.  It sucks.  Sounds like it's time to head for Traci's thread....

    otter 

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  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    Otter,

    I spoke with my genetic counselor today and my blood made it to Salt Lake. Here goes everything...

    Linda

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  • otter
    otter Member Posts: 6,099
    edited May 2008

    At least that step worked as it should...

    otter 

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  • SLH
    SLH Member Posts: 566
    edited May 2008

    I haven't been tested for the BRCA genes because the genetic counselor felt there wasn't enough history of cancer:

    My mom has ovarian cancer

    My sister, two cousins and I have bc

    My mom's 3 brothers had colon cancer

    My other sister and my dad had thyroid cancer

    My dad's sister died of pancreatic cancer 

    I may look into it again, but not until the law passes that insurance companies can't discriminate against genetic testing results. 

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  • Kimber
    Kimber Member Posts: 384
    edited May 2008

    SLH,

    I received the following on April 25, 2008:



    Dear Kimberly,



    Last week we told you about GINA – the Genetic Information Nondiscrimination Act – which if passed would make it illegal to discriminate based on genetic information.

    This protection is critical, since testing for a specific genetic mutation commonly associated with breast cancer can lead to early detection and treatment – saving countless lives.

    Now we have great news. More than 16,000 of you sent letters to your Senators in support of GINA, and it paid off!

    Thanks to your support, the Senate unanimously passed GINA last night (Thursday, April 25) and now the bill just needs approval from the House and the signature of the President – both of which are expected to happen quickly.

    GINA prohibits discrimination by health insurers and employers on the basis of genetic information. So now, thanks to GINA, women who would otherwise have avoided genetic testing because they feared discrimination – thus being denied information that could help them manage their health or their family's health – will have protections under federal law. 

    The passage of GINA is an important step that presents a great opportunity to promote personalized medicine and the use of genetic information in healthcare. This will lead to better research and development for new targeted drugs and treatments, which will save lives.

    GINA will become the law of the land.  And you helped make it possible.

    Thank you for your efforts,

    Diane Balma

    Susan G. Komen for the Cure Advocacy Alliance





    It sure looks to me like you have enough family history to be tested!

    Just my opinion....

    Kimber

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  • SLH
    SLH Member Posts: 566
    edited May 2008

    Thanks Kimber,

    I had heard it was supposed to be passing.  Then I have to get the genetic counselor to approve it in order to be covered by insurance.  My oldest daughter doesn't want to know, but my sister does. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2008

    GINA has passed both the House and Senate.  It is expected to be signed by the president this week. 

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  • otter
    otter Member Posts: 6,099
    edited May 2008

    SLH, I cannot understand why a genetic counselor would tell you there wasn't enough history of cancer, given family history you've outlined.

    My history consisted of myself, my maternal grandmother, and my mom's cousin, with BC (mine was the only post-menopausal dx), plus 2 of my mom's brothers with prostate cancer.  That was it.  There was no ovarian cancer anywhere.  There was a distinct shortage of women in my parents' generation, though--neither my mom nor my dad had any sisters.  I just read a magazine article today about a study that found the formulas for predicting risk of a BRCA mutation significantly underestimated the risk for women who had few female relatives.

    The counselor I saw calculated my risk of a BRCA mutation to be no greater than around 5.5%, but she said she would submit the blood sample if I authorized it.  The company that does the testing (Myriad) has a policy whereby you can send in a sample and they will hold it until they find out how much your insurance will pay (if anything).  If your insurance does not agree to cover the entire cost (i.e., no cost to you), the counselor will call you to discuss the cost and you can authorize the test or decline it.  If you decline it, Myriad throws away the sample.  If your insurance agrees to pay the whole cost, you don't get a phone call--Myriad just runs the test.

    That was the option I chose. Even though my risk of a BRCA mutation was so low (lower than even I thought it would be), my insurance paid for the cost of the test.  I didn't owe anything.

    I think it's time for a 2nd opinion--you need to talk to a different genetic counselor.  Yours sounds way out of line, advising you that your family history does not justify testing you.  OTOH, maybe your counselor was aware of what your insurance company would say.  Did the counselor quote you a predicted risk of BRCA mutation based on your family history?  They should be able to do that, if they know what they are doing.  There are at least 3 computer programs genetic counselors can use to calculate your predicted risk.  One is provided by Myriad.

    otter 

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  • smithlme
    smithlme Member Posts: 1,322
    edited May 2008

    My bone scan came back clean! YIPPEE! I guess all the aches and pains are SE's from chemo, mixed with old age! I can deal with that.

    What puts me at a higher risk for BRCA1 or 2, besides family history, is the triple negative status of my first Cancer. If I test positive I will be having a full hysterectomy. "Just in case", I have a pre-op appointment on June 2, with my OB/GYN. If I have surgery, I need to have it by June 30 so that my disability is at an amount I can live on. After my first diagnosis, I was moved to a position at work that requires no overtime, so my income went way down.

    My older sister will be with me when I get my results, but my other sister doesn't want to know. My oldest daughter wants to know, but my youngest doesn't. If I have a hysterectomy, they'll all know. My genetic counselor has offered to speak with them all...

    Linda

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008
    any hot girl or want to go out with me  e-mail me at mj.platt@hotmail.com
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2008
    any hot girl or want to go out with me  e-mail me at mj.platt@hotmail.com
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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited June 2008

    Linda, what was the results of the genetic test? I have followed your plight with the 2nd dx of bc.

    Sheila

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  • smithlme
    smithlme Member Posts: 1,322
    edited June 2008

    Sheila,

    I have been in hiding for a while! I was diagnosed BRCA 2+ and I'm having a total hysterectomy on June 27. I have put off telling my kids until after they get back from vacation next week. I found out two days before my youngest daughters Senior Ball, then it was her Disneyland trip, then her graduation, All-Night party and vacation with her sister and dad. I wanted her to have a month without any more of my health issues. One of my sisters and our mom are going to be tested, as well.

    I just want this surgery over so I can heal and move forward. It's been a long 15 months and I want to get off of this surgery train. This will be my fifth one, and I'm still not sure if I will ever attempt any type of recon again...

    Linda 

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