BRCA neg, BUT 4 BC

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

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

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.

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

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.

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.

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.

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