LCIS in margins after bilateral mast

Well, I don't know if there are studies on your particular situation, but for LCIS alone, without anything worse (such as DCIS, invasive), even if you find LCIS in one tiny spot in one breast, it put BOTH breasts at risk.  Since LCIS usually does not show up on clinical exam, mammography, or ultrasound (but it sometimes can show up on these, or on MRI), there's no reliable way, short of a mastectomy, of getting (almost) all of the LCIS out, since you can never get all breast cells out.

For LCIS alone, with nothing worse, the usual choices are watchful waiting (at minimum yearly mammos and biannual clinical exams - many women get more than this or alternate mammos with MRI), watchful waiting with tamoxifen - ie with the careful screening mammos/clinical exam/+-MRI), or bilateral prophylactic mastectomies. Most breast surgeons apparently are pretty negative about BPMs unless you have more risk, such as a bad family history.

The risk that LCIS (and nothing else)poses to one's breasts is less than if you had BRCA.

The range of figures I've seen and been given for LCIS and nothing worse (lifetime risk) range from 10% to 85%, the latter in the case of all my risk factors together that have NOT been compared to populations.  The figure that my genetics counselor gave me and my onc gave me was about 30% lifetime incidence of bc (which includes DCIS).  I have a weak family history, and very low probability of being BRCA positive.

There is not a whole lot known about LCIS, and there is controversy about just about every aspect of LCIS (including the name), so expect your doctors/people who you trust to give you different information.

 I can't find a study of women who are in your particular situation, though I haven't gone through the entire Pubmed search.

Well, I know this is indirect info, but in this study, the presence of ALH or LCIS with DCIS did not have any higher recurrance rate than DCIS alone in breast conserving therapy. http://www.ncbi.nlm.nih.gov/pubmed/16333852

In this study, LCIS at the margin was NOT associated with an increased risk of local recurrance for women with breast conserving therapy. http://www.ncbi.nlm.nih.gov/pubmed/18506537

This paper says DCIS patients with a close margin (OF DCIS) have a lower recurrance rate with mast . http://www.ncbi.nlm.nih.gov/pubmed/18954711

I assume your mastectomy margins were clear OF DCIS.

This paper did say LCIS gave a higher recurrance rate for women with stage 1 or 2 invasive,  but this is with breast conserving therapy + radiation.  It doesn't say about women with mast. buthttp://www.ncbi.nlm.nih.gov/pubmed/11346867

This paper says the presence of LCIS should not affect the treatment decisions for women with invasive treated with lumpectomy and rads. http://www.ncbi.nlm.nih.gov/pubmed/11346867

I don't have time to do more research at the moment, but I would NOT give up hope that you may have escaped rads and tamo with your mastectomies.   I do NOT know much about DCIS or invasive; I have not had either of these.  Since you are hoping to avoid rads and tamo, make sure your doc knows about your feelings.  Let us know how it goes,OK?

sherry--that's such great news--- negative nodes! I'm so glad nothing more serious than the DCIS was found. I would think since you've had the bilat masts, you've decreased your risk very, very significantly and that perhaps tamoxifen won't be needed.  It will be interesting to see what you doctor says about it.  I would think they should still keep a close eye on you  though. (with physical exams and perhaps ultrasounds?)

anne

Sherry - I am scheduled for a BM w/ TE next week and so far my primary dx has been LCIS. I am very interested in what your surgeon has to say about the LCIS they found in your margins. Please keep us posted and good luck w your healing! Take care. - Jean

Sherry - Thanks for the good wishes. And let us know what the oncologist has to say. I know it must be pretty discouraging to have gone "all the way" to a BM and then still have to do follow-up treatment and monitoring for the LCIS.

As an aside, I have found that different oncologists feel very differently about prescribing tamoxofin. I had one that pushed the drug pretty hard for me and another that would not prescribe it for me under any conditions. I was on Evista in the past for about three years and he felt that was enough for me. In addition I have problems w/ bleeding, serious hot flashes and night sweats, and problems w/ uterine polyps, so the oncologist I am working with did not feel that tamoxofin or evista were the best treatment for me.

One question for you, if they continue to do close monitoring, what would it consist of? Did your surgeon give you any idea?

Good luck and let us know what you learn from the oncologist and radiation oncologist. - Jean

Erica - I though that rads were never done with LCIS? Well, very rarely, anyway.  I had a partial mastectomy to remove a nodule with LCIS and ALH; no futher treatment besides Tamoxifen was recommended. I found this from the American Society of Breast Disease when I got the dx earlier this fall.  Page 8 has a table showing use of selected treatment options.

http://www.asbd.org/images/asbd_advisor_issue2_2007.pdf 

Close monitoring, including alternating MRIs and mammograms, for the foreseeable future.  DCIS meant that I'd get the scrutiny for 3 years...the addition of LCIS and ALH mean far more than that.

I, too, will be curious as to what the docs say as mastectomy is always out there as a possiblity for me, especially if the DCIS comes back.  

Sherry - My oncologist and surgeon described the close monitoring like this:

Month 1 - bilateral dx digital mammo

follow-up visit w/ bs

Month 4 - visit w/ oncologist for a professional breast exam

Month 7 - bilateral dx MRI

follow-up visit w/ bs

Month 10 - visit w/ oncologist for a professional breast exam

In addition, if I took tamoxofin, there would be a vaginal US once a year.

I hope this helps explain at least one suggested approach to monitoring LCIS.

Best wishes. - Jean

Sherry, I had LCIS and a BPM in November. You have decreased your risks significantly. Since tamox was just approved 5 years ago for LCIS or any other preventative breast cancer I don't think any long term studies could have been done. My  oncologist said he wouldn't recommend tamox because of that reason and after you take it for 5 years (I think thats all you can take it for) your risk will go back to what it is today from and it has a lot of side effects that may be permanent. I had clean margins but I did have it in both breasts and nothing else but I don't think I would take it if I did. My mother in law took it for breast cancer and it did no good along with many other people I know who took it for breast cancer. All it did was cause most of them problems. I would discuss all of your opinions you are getting with your oncologist and trust his opinion as well. Remember you have about 90+ percent of your breast tissue gone and that really decreases your odds a lot! You cant't be 100% sure no matter what you do.( I am almost 100% sure they never do radiation for LCIS it isn't cancer just a risk increaser. They do it for DCIS since this is an actual stage 0 cancer but I think thats only if they can't get it all.)

Sherry- My breast surgeon suggest that I do manual and visual exams since I have my skin and nipples. She said that if I have any thing I will know that it will be an obvious lump. With a mastecomy there is always a chance of chest wall tumor but that is possible if you have the entire breast removed.No mastectomy gives 100% relief but I will take 90-95%! I thought I heard her say that I will still have mammograms at least bi-yearly once I get my implants in. I will confirm that the next time we talk. If I were to get the silicone implants I would need an MRI if they ever thought they had ruptured. The PS said that was the only way to tell since they dont't deflate like a saline implant. I am getting saline I am too much of a chicken to get silicone. The genetic counselor said I could get my ovaries removed and that not only prevents ovarian cancer but the lack of hormones would decrease the chance of getting breast cancer even more. I would only do that if I had an abnormal pap or if my gene test came back positive. The genetic counselor stated that my chances were low of being positive but we are checking anyway ( I have been waiting for those results for over 2 months due to my insurance company)

Karen