personal history + family history + ADH/LCIS = mastectomy?

beasgirl

Hi! Not sure where this post belongs-let me know if a different forum would be better.

I had a L mastectomy about 11 years ago at age 38 (my account here is still active, AND I guessed the right password!). My first ever mammo showed lots of DCIS all over the place; when I had my mastectomy, they discovered some invasive cells as well, so I was upgraded to stage 1a. The cells were HER2+, ER-, PR-, and a type that was aggressive, I forget the term.

My paternal grandmother died of breast cancer at age 46. I have a first cousin from the same side of the family who developed BC as well, after me (she's ok). Both my Nana's young age and my cousin's (she was in her early-mid 40s) make it more likely (I think) that there was a genetic component involved, although I'm BRCA neg.

In Dec. they saw a cluster of calcifications in my R breast, and a core biopsy showed "ADH, some severe, bordering on DCIS in places", and ALH and LCIS. I had an excisional biopsy last Wed, and I'm waiting to hear the results of that.

So! Given all that, it seems like my risk is now through the roof? I'm considering prophylactic mastectomy, but I don't want to overreact. Mostly, I'm just stressing because I feel like there are decisions to be made and I haven't had the big conversation with my doc yet to get these questions answered.

Anybody with a similar situation? I'm not sure how/if my personal history fits into my risk calculations.

AliceBastable

If the genetic testing doesn't show a connection, would your insurance cover the surgery?

I just got my genetics results back, and in spite of my multiple cancers and enough in my family to raise red flags, there was no genetic connection. It could be environmental, or just bad luck. Maybe talk to your PCP or MO about more frequent screening?

beasgirl

I don't know, Alice--did your insurance company reject your request to have that surgery? From what I've been reading, having close relatives and certain types of pre-cancerous stuff definitely raises your risk regardless of genetic test results. I think the genes that have been identified that carry the mutations aren't necessarily the only ones that carry it--I've been tested twice because new ones keep being discovered.

I would think that the insurance companies must go by the statistics about all factors that are known to increase risk, not just genetic testing? But I imagine it also varies from company to company.

AliceBastable

All I had was a lumpectomy and a re-excision. I was wondering if your insurance would cover a mastectomy if it's not cancer. I know most will cover bilaterals if done together, but I don't know if they cover preemptive surgery. I hope they're flexible so you can go with the choice you feel is best, no matter what the diagnosis is.

beasgirl

Yeah, I would hope so too, but I guess I'll just have to wait and see....like I'm doing with everything right now. Thanks for responding, Alice. Hope you're doing well now.

exbrnxgrl

Beasgirl,

You mention BRCA testing, was that done around the time of your mastectomy? If so, please know that there is a much more extensive genetic test available now. It tests for about 33 different mutations. I had BRCA testing in 2011 (negative), but more recently had the Ambry panel. Despite family history and belonging to an ethnic group that is at higher risk, results of the Ambry test were negative as well. There are quite likely other mutations that have yet to be discovered. See if you can get the additional testing as that may help clarify your decision making process.

* I am stage IV, but I have daughters and granddaughters so genetic testing was important for their sakes

Anne929

Hello all...

In a matter of 3 1/2 weeks I've had a diagnostic ultrasound, a biopsy, an MRI, meeting w/ surgeon and then another biopsy, and BRCA testing... the first biopsy showed LCIS/ALH. When I was 29 (I'm 43 now), I had a lumpectomy on the right side; but don't have any results to compare to this event on the left side. Now I have another appointment at the end of the month to go over the last biopsy and the genetic testing. I'm super lucky to have been fast tracked throughout this process. However, when I read about this diagnosis (NOT from dr google, from "Susan B Komen," "the American Cancer Society," and this website), I've read that LCIS/ALH are usually diagnosed by accident when they were testing another suspicious area, and that it usually doesn't present with a palpable area; mine was discovered alone and palpable. I have absolutely no maternal history, and paternal history is riddled with cancer. I've also read and the surgeon mentioned "Tamoxifen" before he did the physical. Additionally, I've read that women in this position have 3 choices in this area: 1- close monitoring and possible meds, 2- surgical excision (lumpectomy) with meds and/or other treatment, and 3- complete mastectomy. After the risk assessment was done at the surgeons, I fell into the 60% risk group. I'm 43. I don't want to live in 6 month or yearly increments. I want to take care of this and never look back. I've also read all about tamoxifen and the risks are defnot worth it to me. I've heard about doing a double, and reconstruction at the same time. I don't know if the surgeon would be willing to go to that extreme with my diagnosis. I know my insurance will cover all of it. I'm waiting for the results of the last biopsy and genetic testing to come back. Can anyone relate? Or have experience or even an opinion. I'm a fish out of water here. And actually living in fear. Please, please, help me. Thank you all for the support many of us don't have at “home."

AliceBastable

Of course, any patient can refuse to take the anti-hormonals, but a mastectomy doesn't mean they won't be prescribed, or that the MO won't try. It's usually lumpectomy + radiation = mastectomy. Chemo (if needed) and anti-hormonals are a separate issue.

farmerlucy

I had a similar diagnosis, very early onset family history on my mother’s side, ALH/ADH. 50% risk. No known mutation. I had a PBM. Best decision I even made. No regrets whatsoever, except that I should have done it sooner.

beasgirl

Exbrnxgrl , yeah, I did another round of genetic testing a few years ago, still nothing--sounds similar to yours. My oncologist agrees that it's likely a gene that hasn't been isolated yet. Oh well.

Anne, I know exactly (probably everybody here does) the whirlwind you're going through and the enormity of the decisions you're looking at. Last time around, this was the worst part--waiting, going through a thousand possibilties in your mind, having people tell you "I'm sure it will be ok" (well, thanks but you have really nothing to base that reassurance on) etc. Once you know what you're dealing with, you can make a plan and feel a little more in control. But I guess you know that too, since this is your second go-around as well.

Farmerlucy, that does sound pretty similar--did you have a prior history yourself? Was your surgery covered by insurance?

Another thing I don't know about is like, my first surgery was a DIEP flap reconstruction, which looks meh to me, but I guess is fine. What would I do if I decided to remove the other breast? I don't want any more tissue recon.--the trauma to my body was pretty extreme. But how weird and wonky would it feel to have an implant on one side and my crazy frankenboob on the other??

The waiting is making me nuts. Glad this thread has found some fellow travelers. xo