Will insurance cover prophylactic BMX with BRCA negative?

Vickyall

Hello everyone, 

I'm new to this board and maybe this was posted already but I couldn't find it.

A week ago I had a needle located excisional biopsy due to suspicious microcalcifications on the right breats, I'm happy to report that results were negative.  I have small dense cystic breasts and I'm 40 years old.

I will be meeting with the genetic counselor next week for BRCA testing as I have a strong family history of BC and colon cancer, all fraternal (2 cousins diagnosed mid 40's, one early 50's, grandma died at 47, two aunts diagnosed late 40's and one diagnosed early 50. All BC)

A really don't want to live with the worry going forward and I'm afraid my insurance wont cover prophylactic bmx if brca would happen to be negative; have any of you seen the opposite based only on family history?

The BS recommended mammograms every 6 months and yearly MRI's, although I know this screenings will help with early detection, I'm not sure I can deal with the anxiety.

Any help or advice will be appreciated it..

Thank you,

exbrnxgrl

hi Vicky,

First of all, congrats on the negative biopsy. I know your family history is worrisome, but try not to get ahead of yourself. Besides the BRCA testing, the genetic counselor can look at your entire family history and help you understand in realistic, though not absolute terms, what your risk may be. Although I found my bmx to be easier than imagined, it is still major surgery and that in itself involves risks and possible complications. As for insurance, I don't know if they will cover a mastectomy if you don't have bc or the BRCA gene. I tend to think not but I could be wrong. But, I think these are all great things to discuss with your genetics counselor. Wishing you the best.

DiveCat

I am in Canada, so a bit different, but my PBMX is covered based on family history. I am an uninformed negative with no known BRCA-mutation in my family.

From my time on FORCE (which I recommend checking out), I know of many other uninformed BRCA-'s who had their PBMX (and recon) covered in the US by insurance. Some cannot know the meaning of their tests as all affected family members are dead or unwilling to test. Some have had affected members test negative. It is understood that BRCA is not the only possible gene at play in hereditary risk. Your doctors need to present reason for it, but a strong family history and high personal risk assessment can be sufficient, even without a BRCA+ or your own personal case of BC.

As said above, this is a good thing to discuss with your genetic counselor. Is anyone in your family who has been affected by breast cancer available to test? As this could help put your own results (if negative) into context. Big difference between being a "true negative" and an uninformed one! Your genetic counselor should be able to provide you a risk assessment no matter what the results.

It is a big, big decision, so the more clarity you can get the better. For some women it is the right decision for them, but you need to be aware of the potential complications, realities, and limitations of the surgery (for example, it does not remove ALL risk).

Vickyall

I've been trying to educate myself as much as I can; all affected relatives are now dead and I also should have mentioned that the rest of my family don't live in this country, I also have a fraternal half sister which I lost contact many years ago and I have no way to know if she's been diagnosed and that I also have a ashkenazi jewish background.  I know that my GC will be the one to help me determine my risk factor and options and I fully understand the magnitude of getting bmx and reconstruction as I have really close friends that have gone through this. 

In 2005 I had a partial hysterectomy and pre-cancer cells were found in my cervix, I know that there are no correlation between that and BC, but it's a scary feeling to think that this monster could strike... five weeks ago I had my ovaries and tubes removed due to multiples cysts and now I'm on estrogen replacement therapy which concerns me as there still a lot of debate regarding the increase risk for BC while on it; my OBG/YN put me on a very low dose since we don't know if my relatives BCs were estrogen receptors.  

DiveCat

Vicki...with an AJ background you should have little issue being tested, since there are red flags in your background history, but a negative result will need to be put in context for you by your GC. They may want to just try the AJ panel first. Most mutations in AJ families are founder mutations. 

Please check out FORCE. They also have their next conference in June; lots of interesting sessions.

I can understand your anxiety about your potential risk. I was not trying to suggest you were not informed, just that the more info you can have before you, the better as a true negative result would be great to have if possible. I am well researched after having been at this process toward surgery for years, and have witnessed many have surgeries, but I am not even sure yet I can say I will understand the full magnitude of what it will be like for me until I am actually on the other side of surgery as I have also fully realized everyone has a different experience. Hoping mine goes well, but prepared that I might not be so fortunate!

Like I said though, if you do remain an uninformed negative it is absolutely possible to be covered for the PBMX/recon based on strong family history alone. This is not an uncommon situation, especially in families that have been devastated by cancer.

I had pre-cancerous cervical cells when I was a teen, so understand that can be a little scary but as you know already it is not related to BRCA, and pre-cancerous cells really are not very uncommon and VERY treatable. That is why paps are important.

Having removed your ovaries/tubes will also reduce your BC risk, but I do understand your worry about HRT and BC. Some BRCA+ women doing the prophylactic ooph surgeries do get HRT, but often have PBMXs too.  There is still rather divided opinion about HRT in BRCA+/high risk women, even after PBMX. I believe the conference may even have a topic on this this year, but not sure.

Vickyall

DiveCat, thank you for the reply!

I agree with you, having friends that have gone through the process of bmx it's not the same that going through it myself.  Everyone is different and deal with things differently and also heals differently.

Where can I find more information about FORCE?

Thanks,

Infobabe

Does anyone know if Medicare covers prophylactic mastectomy for BRCA negative?  I have heard it no longer does.  When I try to research it it says, yes if the patient meets certain medical conditions but doesn't say what those medical conditions are.

lintrollerderby

Vickyall: facingourrisk.org

Infobabe: I'm not sure. Sorry. In the past, it was if a first-degree relative (especially mother or sister) had been diagnosed pre-menopausally with bilateral breast cancer, but that was a few years ago and I don't know if the guidelines have been updated.

JAN69

Medicare covered my prophylactic lefty in October 2012.  Surgeon's office took care of all details so I don't know how she labeled my reasons.  As far as know, I'm not BRCA+.  I was 68 at dx so no testing.  Good luck.  Jan

Infobabe

Thank you, ladies.  If anyone hears of something more recent, please post.

Vickyall

I'm meeting with BS on 5/8 to get my genetic results; as the day gets closer I'm getting more anxious...

The GC said that I could expect 3 type of results, negative, positive and inconclusive...