Anonymous wrote:Did anyone who tested negative (for BRCA etc). but still have BC in the family consider getting a prophylactic mastectomy?

I didn’t, because there are screenings that can be done for breast cancer. But my mother did die from ovarian cancer and I did get a prophylactic oophorectomy. It was not quite as straightforward as it might sound, as I was diagnosed with hormone-sensitive dcis, so the oophorectomy served to both reduce my future breast cancer risk and avoid ovarian cancer. But even before the dcis diagnosis I was strongly considering an oophorectomy. The diagnosis just pushed it along. There are no good screening tools for ovarian cancer and it is often found in the later stages.

It's always possible you could still have a mutation that isn't known yet. My husband's grandmother, mother, and two aunt's have all had breast cancer. One of the aunt's died of it very young, 30s, and the others survived with treatment. His sister just died of a uterine cancer at 47. His mother and the aunt who survived did genetic testing (not sure about his sister) and no mutation was found but I feel like it's pretty obvious something "runs in the family".

Did anyone who tested negative (for BRCA etc). but still have BC in the family consider getting a prophylactic mastectomy?

Anonymous wrote:I just did the Color Genomics test for I think $50 after my dad tested positive for the BRCA gene through FoundationOne while being treated for pancreatic cancer. My test came back positive and I since finding out, I go to many more doctors appointments than I did before to be screened for breast, gyn, skin cancer, etc. I am also undergoing IVF to avoid passing the gene down (I am 30). I haven’t had my breast or ovaries out but I will before I’m 40. The knowledge that I’m BRCA+ has changed my life and some days I wish that I didn’t know because it’s all so heavy. My feeling is that if you plan to make big changes based on the results (like have prophylactic surgeries or IVF like me) then it’s probably worth it to know your genetic predisposition to cancer, but otherwise you may just end up with more anxiety-inducing doctors appointments and scans to worry about. But that is just my own opinion and of course YMMV. Hopefully you’re negative for the cancer related mutations!!

Jumping in here to share my experience. My mother died from ovarian cancer. My gyn recommended genetic testing and said she recommend removing my ovaries if I had the gene. I know I couldn't live with the stress and anxiety and I don't want my ovaries removed just yet, so I declined the testing. 3 of my 4 sisters were screened and none of them has the gene.

Genetic testing is standard practice for oncology now. Listen to your oncologist and get the testing. Yes, insurance covers it, and yes it can absolutely change your treatment plan. Get the testing, this shouldnt even be a question. You know you need this testing, but ar afraid to be in the same situation as other family members. Get the test.

Anonymous wrote:Mine was covered by insurance because of a strong family history of breast and ovarian cancer for my mother, grandmother and maternal aunt.

I was negative for genetic risk. Then my sister was diagnosed with breast cancer and I was diagnosed with DCIS, hormone sensitive. Discussed with a genetic counselor and multiple doctors and decided to have an oophorectomy. Had my genetic risk been evident with testing, I would probably have had the oophorectomy earlier. Genetic counselor felt it was possible that there's a genetic risk in my family that isn't in the current testing.

Word to the wise, if you don't yet have life insurance in place, get it set before even discussing it with your doctor. When I applied the life insurance company found the note in my doctors records and basically priced it as if I were BRCA positive. They said I could reapply if I did get tested and turned out to be BRCA negative. I did, but before I could go through the reapplication process I got the DCIS diagnosis which basically scuttled the whole thing!

I have a different genetic mutation which raises my risk of kidney cancer and echo the bolded 1000%. And think about if you want long term care insurance.

In your case, the question I would really want answered would be if you are positive, what would change as far as your care? For me, I need an MRI annually, so get everything on the record was important. If it's knowledge for knowledge's sake I probably wouldn't do it.

Tested because multiple close, female relatives had breast cancer. Insurance paid. I was negative, which was a huge relief.

My sister and I didn't find out we had a cancer-causing mutation until after we'd both been diagnosed with breast cancer. Now our kids know to get tested and can take steps to try to avoid cancer if they're positive. For me, it's a no brainer - our cancer can always come back and kill us - what a blessing it would be for our kids not to ever have that worry.

Tough one, OP.

What you need to ask yourself is: are you willing to remove things to prevent cancer? Because depending on what you are removing it comes at a potential negative impact to your health as well.

DEFINITELY get life insurance signed sealed and delivered BEFORE getting ANY testing.

-cancer survivor who is not getting tested

Yes! Do it!!!

I have so much more peace of mind that I have the gene. It means more testing and more info.

I went through genetic counseling because I have LCIS which significantly elevates my breast cancer risk. I found the process interesting, although I think it’s really important to consider in advance what you will do with information about risk if you get it and it’s positive. I definitely found waiting for the call back pretty anxiety provoking, not even so much for myself but because of the implications for my daughter. In the end I was grateful to test negative for the whole high-risk panel for breast and GYN cancers. I could have done an expanded panel that looked for risk for all kinds of other things but I declined it. I don’t remember the cost I don’t think it was bank breaking tho.

I just did the Color Genomics test for I think $50 after my dad tested positive for the BRCA gene through FoundationOne while being treated for pancreatic cancer. My test came back positive and I since finding out, I go to many more doctors appointments than I did before to be screened for breast, gyn, skin cancer, etc. I am also undergoing IVF to avoid passing the gene down (I am 30). I haven’t had my breast or ovaries out but I will before I’m 40. The knowledge that I’m BRCA+ has changed my life and some days I wish that I didn’t know because it’s all so heavy. My feeling is that if you plan to make big changes based on the results (like have prophylactic surgeries or IVF like me) then it’s probably worth it to know your genetic predisposition to cancer, but otherwise you may just end up with more anxiety-inducing doctors appointments and scans to worry about. But that is just my own opinion and of course YMMV. Hopefully you’re negative for the cancer related mutations!!

I was tested after my mom got breast cancer in both breasts at different times. Covered by insurance. She was tested first and came back with a genetic mutation that not only causes several types of cancer, but also causes birth defects when both partners carry the mutation. I was relieved to find out b/c now I am closely watched by an oncologist twice a year (including imaging). If you have an elevated risk then you likely need to be screened more often. Also my eldest daughter is of child bearing age so we had her tested. She also carries the mutation so will need to get her future partner tested before having kids.

Mine was covered by insurance because of a strong family history of breast and ovarian cancer for my mother, grandmother and maternal aunt.

I was negative for genetic risk. Then my sister was diagnosed with breast cancer and I was diagnosed with DCIS, hormone sensitive. Discussed with a genetic counselor and multiple doctors and decided to have an oophorectomy. Had my genetic risk been evident with testing, I would probably have had the oophorectomy earlier. Genetic counselor felt it was possible that there's a genetic risk in my family that isn't in the current testing.

Word to the wise, if you don't yet have life insurance in place, get it set before even discussing it with your doctor. When I applied the life insurance company found the note in my doctors records and basically priced it as if I were BRCA positive. They said I could reapply if I did get tested and turned out to be BRCA negative. I did, but before I could go through the reapplication process I got the DCIS diagnosis which basically scuttled the whole thing!

My oncologist recommended to get this done so we have more info as to how to take care of me...
I am on the fence...
A friend of mine who had it done told me it was not really helpful for her -- it only added an anxiety that her risk was elevated...

Grateful for any info re. your experience...
- how much did you pay total?
- did your insurance cover for consultation? blood test?
- were the results worth it?
- did it change the course of your healthcare? -- THANKS SO MUCH

In my case, i have cystic breasts and ob/gyn freaks out after every annual... breast surgeon drained one larger cyst which was benign. She is not worried about other cysts [based on mammo and ultrasound] BUT just very strongly recommends the testing...

I have breast cancer on both sides of the family...