BRCA neg, BUT 4 BC

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Cookiegirl12
Cookiegirl12 Member Posts: 28
edited June 2014 in Genetic Testing

Just to put it out there. I was 43 when DX with BC. I am the FOURTH cousin to be DX'ed under the age of 43, also uncle & grandfather passed with cancer, that I know of. BRCA came back neg. all I heard in the BS office was negative. I didn't even realize about variants. Will follow up.

I advised my younger cousins to get checked anyway. Still skeptical about the test results.

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2013

    Hi Cookiegirl,

    The main Breastcancer.org site's page on Genetics points out that there are other gene abnormalities that can contribute to breast cancer, other than the BRCA1 & 2 genes. You may want to talk to your genetic counselor about those, too!

    Hope this helps!

    --The Mods

  • Cookiegirl12
    Cookiegirl12 Member Posts: 28
    edited March 2013

    TY. it does. Now to see if my insurance will cover...

  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited March 2013

    Cookie,



    I too am BRCA negative. Was diagnosed at the age of 40. I had both BRCA and BART testing done at time of diagnosis and they both came back negative. I was thrilled but shocked at the same time. Both my gmom and mom had bc, along with ovarian, prostate and testicular cancer all on my maternal side. Too much of a coincidence for me to believe that my bc is not genetic related. Once I'm fully recovered and through treatment, I'll check back in with my genetic counselor for further testing. They're are many other genes in the clinical trial phase that may be linked to bc besides the BRCA genes. Just depends on whether insurance covers the test or not because I've heard its very expensive. Good luck and let us know what you find out!



    Hugs,



    Jen

  • Cookiegirl12
    Cookiegirl12 Member Posts: 28
    edited March 2013

    Jen, I was told by my BS that the BRCA test cost around $4000, w/o ins. I wanted to know in case I got denied. I am concerned about the younger family members as well as for myself. I asked for a BMX, but BS really didn't see a need. I too will wait until end of TX. More concerned right now w/ getting through rads, hormone SE's, LE prevention, diet changes, life changes, relationship changes,...

    Hugs right back at you. Could you believe that at our age we are now classified as a middle age persons? I think it should come with our mid life crisis presents...

    Speedy recovery to you,

    Cookie

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Cookie - 

    For $700 (w/o ins), they can do the Bart test which takes things a step further than the BRCA test.  There is also another test that is around $3000(w/o ins) that can determine links especially in regards to thyroid, prostate, and other cancers.  My mom's insurance has covered both of those, and if you don't already, maybe try to see a genetic counselor.  I'm 3rd generation with BC and so far both BRCA and Bart were negative.  My mom had both BC and thyroid cancer so for the sake of my siblings and their kids, my mom is doing that last test as well.  We haven't gotten the results back yet.  The one thing the genetic counselor keeps repeating to us is that obviously there are families with strong histories that test negative which probably means that all of the genetic connections haven't been found yet.   I've been worried for my sister, and I think it is good that you have advised your cousins to be checked and be vigilant.

  • Cookiegirl12
    Cookiegirl12 Member Posts: 28
    edited March 2013

    I think if my ins doesn't cover, my family should do a collection and pay for it. I feel like a guinea pig now anyway. JK.

    Nbnotes...I am very curious to know how your mom's results come back. Please let us know. I too have heard that, your family...Well, call me Ms. Obvious.

    Hugs

  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited March 2013

    Cookie,

    Yes you are absolutely correct. I have very good insurance coverage with BC/BS. My test for the BRCA and the BART testing was approximately $3,900. It was all covered under my insurance because I have such a strong family history of BC. My out of pocket payment for the test was $70. My genetic counselor said they also offer BreastNext testing. This tests 14 other possible genes that may be linked to breast cancer as well. She thinks I may possiblly test positive for one of these other genes. She did say that she is not sure if that test would be covered under my insurance or not. It's a newer test and not all insurance cover any portion of it yet. Once I get squared away with treatment and recovery I will have her check into if it's covered or not and go from there.

    I wanted to have both my children tested (I have a 23 yr old daughter and 17 yr old son). Since I was diagnosed with IDC cancer, it is possible for my son to get IDC too. IDC is the only breast cancer that shows up in males that I know of. And my daughter is very high risk being 4th generation. My genetic counselor told me that since I tested negative for both BRCA and BART that the chances that either one of my children would test positive is VERY small. She said the same with my siblings. Now if I have further testing and find out I test positive for one of these other genes, then I will make sure both my children and siblings all get tested, along with my mom. The counselor told me that with my gmom, mom and me all being diagnosed with bc that if ANY of us tested positive for BRCA it would have been me because I was diagnosed so much younger than my mom and grandmom (being under 50 yrs old).

    I was a candidate for lumpectomy or UMX based on the location and size of my tumor. Based on my strong family history and my MRI that showed that my breast has "multiple issues", I opted for a BMX. I do not regret that decision at all. After surgery, my pathology report showed I not only had IDC in my left breast but DCIS as well. Both my breasts were filled with multiple cysts. I did not want a repeat occurrence a few years down the road. I firmly believe that every woman has to make the decision that is right for her. No one else knows your body like you do.

    I agree with you that I think we deserve some kind of mid-life crisis present after all of this! I think I have aged 20 years in the past few months from all the stress and worrying! LOL

    Hugs back at ya! :)

    Jen

  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited March 2013

    Nbnotes yes please keep us posted on your mom's results. I am very curious to hear what you find out as well!

    Jen

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    I will keep you posted. They warned us that that test takes a while to come back, but when I know more I'll definitely let you know.

  • klapper56
    klapper56 Member Posts: 8
    edited March 2013

    I was diagnosed with bc IDC stage

    1 grade 1 last June. My maternal grandma and my mother both had bc. My grandma passed away from bc but my mother did not. She lived for 32 years. She passed away from pancreatic cancer. We are ashkenazi Jews. I was tested for the brac.,bart and the 14 other genes. I
    tested negative. I was asked to participate in a study at the city of hope that is looking for other possible genes.
    I have a fraternal twin sister who is having a biopsy Tuesday. Her mamo and ultrasound showed Ned but because of my diagnosis she was given an mri. and few areas lit up. We know that mris give alot of false positives. If god forbid she is diagnosed with bc then in my opinion there has to be a genetic link that we just don't know about.
    We have a younger brother who is trying to get insurance to pay for genetic testing.


  • lekker
    lekker Member Posts: 594
    edited March 2013

    When my BRCA and BART tests came back negative, my genetic counselor approved the Broca test out of the University of Washington. It looks at 40 oncogenes other than BRCA 1 and 2 (thanks for the patent Myriad - not). It takes 12 weeks so I won't get results until May. It is in general a more robust test than the "NEXT" tests from Ambry but you should work with your genetic counselor to see what your next step should be. So much of the genetic information out there is solely about BRCA 1 and 2 and it's dificult to know where to go next when a genetic cause is suspected but BRCA is ruled out. I hope we all get the answers we're looking for soon.

  • Cookiegirl12
    Cookiegirl12 Member Posts: 28
    edited March 2013

    TY ladies for your responses. I am currently in TX and constantly asking myself, what's next, what now, etc. I know there has to be a link. Besides cancer, most of my family live a very healthy life (diets, no one is overweight, mostly non-smokers,...).

    I just hope they find some answers soon. If not for us, for the sake of the next generation. God bless...

    Knapper...sorry for your loses. Hugs to you and family.

    Jen..I couldn't imagine the worries you have right now. Good luck on your TX and the follow up.

  • Janetanned
    Janetanned Member Posts: 532
    edited March 2013

    I too, have a strong family history for BC and was tested for the brca genes.  Both my sister and I came up negative.  I saw an MO at HUP who specializes in genetic mutations.  She wants me to come back for more testing.  Cowden's syndrome as well as other mutations are being considered.  My appointment is this Tuesday.  I'm not sure what will be covered by insurance.  However, I would like to know what is going on genetically for my daughter's sake as well as for my nieces and cousins.

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited March 2013

    I'm waiting for my results and so exhausted today from everything that started on 3/3/2012!!! My insurance did cover the $4100 expense due to my sister having BC at 32, although she was BRCA negative - or so she says. Sadly, my sister has lots of emotional and mental problems and can't be trusted to tell the truth about this - even to herself.

  • Cookiegirl12
    Cookiegirl12 Member Posts: 28
    edited March 2013

    Hey, gals. I know that I said that I would wait until TX is over (wink wink Jen)...but called up a few female cousins yesterday. Told them I might look into clinical trials. They were of course all curious and wanted to know the results. I told them I needed their consent, vials of blood, and saliva. I told one cousin to give it to me. LOL. They agreed. Spoke to genetic counselor and researcher. TY NY Hosp. I gave her all the details, including ins coverage. She informed me that BART will be cover and she is going to push for my BreastNext. Also, due to dx age of under 30 in the family she is researching some trials for us. I say go for it..what's one more blood draw at this point. If nothing else, maybe it will help in finding a cure...

    Speedy recovery to all and I hope our love ones are safe.

  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited March 2013

    Cookie,



    Good for you! I'm so glad you're getting more help and looking into clinical trials. I had my genetic testing done prior to my BMX on 02/21. I needed to know the results before surgery because my results would determine my decision on surgery. Initially I had leaned towards LX but even though BRCA came back negative for me, I opted for BMX instead. My MRI revealed possible other issues in my breasts so I wasn't taking any chances.



    My BRCA test was done with a simple swish and spit test. Took 1 week exactly to get my test results back. I did contact my genetic counselor again on Monday and she is checking with my insurance co to see if further testing would be approved or not. Not sure if she means for BreastNext test or Broca test. She didn't specify the name but did said results would take 12 wks to get back. I told her no rush at this point. I just want to know for sure if there's a genetic link!



    Please keep us posted what you find out. These tests should be covered for any woman with a family history of bc. We need to know the answers not just for ourselves but for all our relatives as well. Hoping the more research they do and the more they can identify these bc genes the less women will have to suffer through a bc diagnosis and eventually find a cure!



    Jen

  • Cookiegirl12
    Cookiegirl12 Member Posts: 28
    edited March 2013

    Jen,

    Ditto.

    Cookie

  • weety
    weety Member Posts: 1,163
    edited March 2013

    3 years ago at diagnosis, I tested negative for both BRCAs and BART.   My dad was diagnosed with pancreatic cancer this fall.  So back to the geneticist I went.  Within these last few years, a new breast cancer gene (goes with pancreatic cancer history) has been found called PALB2.  Yep, I've got it.  Lucky me. 

  • thirdgenerationmomof2
    thirdgenerationmomof2 Member Posts: 248
    edited March 2013

    Weety, wow sorry to hear that but good to know the results though. Are pancreatic cancer and bc linked? Sorry if that's a dumb question but I don't know. I was told breast, ovarian, prostate and testicular are all linked.



    What other genetic test did you have? Was it covered under your insurance and how long did results take?



    Hugs,



    Jen

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