How Does LCIS Factor Into DCIS Diagnosis?

Chickenpants · October 2011

I'm doing lots of research and want to be well informed as to decision making once all of my results and tests are finalized... but the LCIS & DCIS forums seem to be separate for the most part. What about those of us with both? I understand DCIS & treatment options, but how does the LCIS with it's associated risks for a possible future invasive cancer factor in?

sweatyspice · October 2011

It doesn't really. As I understand it, LCIS is seen as an indicator that you may be more likely to develop BC somewhere in either breast, but not that the LCIS cells themselves will become invasive.

With DCIS the thinking is that it's the DCIS cells themselves which will mature into invasive carcinoma.

Edited to add: I had both LCIS & DCIS, and I think I had dirty margins in the "formerly known as good" breast for LCIS. None of my Drs seemed concerned about the LCIS.

Anonymous · October 2011

If you have both DCIS and LCIS, your treatment would be directed at the DCIS as it is the more serious of the 2 . If you choose to go the route of lumpectomy, radiation and tamoxifen for the DCIS, you still would have risk remaining from the LCIS (as you cannot remove it all unless you have bilat masts) allthough it would be decreased 50% by the tamox; you would still have to be closely monitored. If you have bilat masts, you would be eliminating both the DCIS and the LCIS (although not all the LCIS, as some breast tissue always remains even after bilat masts; but the remaining risk would be very low); as long as no invasive bc were found during surgery, you could avoid radiation and tamoxifen.

I'm not recommending one or the other, ------I'm just saying that having LCIS in addition to DCIS does not mean you can't do lumpectomy/rads/tamox for the DCIS; but you do still have the risk of invasive bc from the LCIS and need to be closely monitored for it. I hope that makes sense.

Anne

Chickenpants · October 2011

Thanks Anne, I kind of figured that. They are really separate issues. Even when I knew I had ADH, I was still worried about high risk monitoring for the rest of my life. Now with the results of the excisional - hopefully the buck stops here and nothing more relevant shows up in the MRI - I am likely leaning towards a double mastectomy. Although, I have read up on women that have good margins with surgical removal of DCIS and choose to leave it at that - no further treatment. I would take a chance on that, but now this darned LCIS showing up, it changes things. I call this the "short straw syndrome".

I feel I'm becoming educated, but feel totally lost and like my life is on pause.

Thanks to both of you for your replies.

momnme · November 2011

I too deal with both issues. To put it very simply, as I understand it, DCIS can be treated without mastectomy and LCIS is mostly a red flag. I have had three surgeries, two on one side and one on the other, with radiation on one. I tried Tamoxifin but I hated the world for three months and could not stay on it. I am definately a watch-and-wait type of person. "Change" is a difficult word for someone like me, so it needed to sink in. I don't typically jump the gun, and since all information I have read on DCIS, there is no need to rush into anything. I understand the short straw syndrome as I have a few other medical things I deal with as well, but I am satisfied with my choice of treatment. The important thing is for you to be comfortable with whatever you decide, and make it your decision. If you question anything about your doctor, get another opinion. Bring someone with you to appointments (or record it) and write down questions to bring with you. There are always things you forget. I try to think of LCIS as the reason I will be looked after more closely than if I didn't have it. I wish the best for you and the power to make informed decisions, whatever they may be.

alexandria58 · November 2011

I had both, and that fact helped me make up my mind to do the BMX. There were a few studies on concurrent LCIS and DCIS, and on LCIS in the margin, written up in the last two years. The studies, done at Sloan Kettering and at UCLA showed that the presence of LCIS within the DCIS increased the recurrence rate over just having the DCIS.

here's one link:

http://www.ncbi.nlm.nih.gov/pubmed/19170233

Also, try googling for concurrent lobular neoplasia with DCIS.

alexandria58 · November 2011

Here's another article on the same study.

http://www.canceronlinejournal.com/details/journalArticle/619325/Concurrent_lobular_neoplasia_increases_the_risk_of_ipsilateral_breast_cancer_rec.html

scaredycatwoman · March 2012

Hi Please tell me what was so horrible about taking tamoxefen??

Anonymous · March 2012

scardeycat----while you may hear some negative stories regarding tamoxifen, most do welll with it--hot flashes are the most common SE. All medications have SE, even OTC meds, and they affect different people differently. So just because one person has a certain SE, doesn't mean you will experience the same. You have to see how it affects you as an individual. I took tamoxifen for 5 years and tolerated it very well with minimal SEs, as did my mom.

Anne

How Does LCIS Factor Into DCIS Diagnosis?

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