New LCIS diag and perplexed

wildbigsky

New LCIS diag and perplexed

wildbigsky

Thanks to all of you who give so freely of your time and wisdom here.  Pretty typical LCIS story I guess...annual digital mammography found little specky suspicious calcifications that had changed slightly over two years.  Stereotactic biopsy found LCIS.  Doc recommending excision AND 4 - 6 weeks of radiation.  I've already scheduled the surgery and made arrangements to stay off the road from work travel for the radiation. 

Now I'm doing my homework and wondering if all this is an overeaction...especially the radiation???  I'm a very healthy 52 yo, no family history of cancer (breast or otherwise), healthy lifestyle, etc.  BUT...I want to and will do what's best.  Just having a hard time figuring out what that is!!!  Thanks for any thoughts you're willing to share.

beacon800

This treatment plan is not typical for LCIS. They are treating you as though you have DCIS. I would get a second opinion from a different provider, preferably at a comprehensive cncer center.



I have read papers that discuss treatment including radiation for pleomorphic LCIS, but have not seen this in practice either.



Bottom line, if it were me I would not follow their advice. Get you path report, maybe there is something else there you are not aware of.

Anonymous

As Beacon said, radiation is generally not a treatment for LCIS, but DCIS. I would also encourage a 2nd opinion. The standard options with LCIS are close monitoring, tamoxifen, or BPMs. Did they mention anything in addition to the LCIS in your pathology report?

Anne 

wildbigsky

Thanks so much.  OK..first thing Monday morning I need to make sure I understood correctly that he said LCIS and not DCIS and get my pathology report.  I was a little shocked when he was telling me all this so it's quite possible that I didn't get it all right and had no idea what questions to ask.  Appreciate your quick responses.

LisaM12

Wildbigsky,



I was recently diagnosed with LCIS, and the oncologist I saw this week recommended 5-6 weeks of radiation. After the reading I had done here I knew that was not the standard approach.

I point blank asked him if he considered this cancer stage 0 or pre cancer, and he said pre cancer, not cancer. His reasoning for the radiation was that the margins of the lump were positive, another thing I didn't think was a concern with LCIS, since it is multifocal.





After going home and thinking about it, I was extremely puzzled, because he was recommending the same tx as someone who had early stage cancer, lumpectomy and radiation.



The next day I called the surgeons office, and asked for a referral to an oncologist recommended by a doctor I work with, and also explained why and my concerns about the tx plan laid out by the oncologist. (the oncologist the surgeon referred me too) To make a long story short, surgeon called the rad oncologist, because he felt radiation wasn't necessary, rad oncologist agreed.



I don't know why this oncologist made the recommendations he did, I only knew from reading here that it wasn't the norm, but I guess in my case (and possibly yours too) its not completely unheard of. Also regardless of the recs by the oncologist, the rad oncologist was not going to go along with it, so it was a moot point.



Lisa

KellyMaryland

The recommendations for LCIS are so muddled!  I live in a major metropolitan area so had the opportunity for several opinions and had some surgeons and oncs recommend a more cautious course (though none recommended radiation) and some thought it not so concerning at all and recommended just extra imaging.  Because LCIS is thought to often be multifocal and bilateral, I fail to see how radiation would be useful...maybe I'm missing something.

iammommy

I agree with Kelly and the rest of the posters. My recs for plain LCIS were monitoring with mri/mammo alternating 6 months, tamixofen for 5 years, or pbmx, which is what i chose. Getting the path. Report and talkimg to your doc is right where I'd start, too. Please let us know what you find out. Nan

JanetM

LCIS is frustrating.  Right now I am doing the close monitoring and I will see where that takes me.  i am scheduled for a follow up diagnostic mammo in November.

wildbigsky

OK I'm back with my pathology report from my needle core biopsy.  The diagnosis section has three findings-- "1. focal lobular carcinoma in-situ", 2. benign fibrocystic changes, and 3. microcalcifications identified within benign ductal structures". 

Microscopic description says "mostly normal ductal and lobular architecture.  There are cystically dilated ducts with apocrine metaplasia.  Focally the ducts are expanded and show a proliferation of cells with uniform round nucli.  A small panel of immunohistochemical stains is performed (ancillary studies).  A few scattered microcalcifications are seen within benign ductal structures.

They performed 2 ancillary studies.  First was cytokeratin 34, block 2A, results were positive; second was E-cadherin, block 2A, result were negative.

So, again, based on this diagnosis the surgeon recommended excisional biopsy ASAP followed by 4-6 weeks of radiation.  I also have a small hemotoma "lump" from the stereotactic biopsy that hasn't gone away and they're recommending I have that removed as well.  The surgeon said he wouldn't do the surgery to remove the hematoma unless he also was going in to do the excisional biopsy.  So...my questions are 1) Should I have the excisional biopsy?  2) Is it really an "asap" situation?  3) Does the radiation recommendation make sense given the diagnosis?  Thanks so much for your time and interest to help. 

beacon800

Sheesh, to my reading you hardly have anything.  Which is great news!!  No I would not radiate this.  That's like using a chain saw to floss your teeth in this case.  You need a second opinion. 

KellyMaryland

I would keep the scheduled excisional biopsy.  I don't know about ASAP but I wouldn't sit on it, for peace of mind as much as anything.  But I would not be inclined to go through radiation without first getting a satisfactory answer as to what benefit it would have when LCIS is thought to be multi-focal and bilateral.  Was there any talk of another option, like taking Tamoxofen, extra imaging, etc?

beacon800

Sorry I did not answer all the questions: no this is not ASAP. Not at all, based on the path report. No I would not do the excisional right away. Here is why: based on all I know, your docs are not experienced with this finding. Therefore I imagine they may not be quite as advanced as some other providers. How an excisional bx is done makes a difference I had two of them, so beautifully done with circular incisions around the nipple - very much invisible upon healing. The LCIS they were going for was a distance from the incision but this technical detail they were well experienced with.



If I were you I would go to a breast surgeon who specializes in breast oncology surgery only. These are expert as it's all they do. Find one at a major cancer center or university setting. bring all your films and the actual slides from your path report. You are very lucky to have a non urgent non invasive problem. You will probably be recommended to take tamoxifen and the studies show it is effective chemo prevention. I assume your LCIS is er positive, which would indicate tamoxifen use.

leaf

I've been away on vacation.

There are only a very few papers in Pubmed that talk about the use of radiation for LCIS (and nothing worse - i.e. not LCIS with DCIS or invasive breast cancer.)  Both these papers are from France.

http://www.ncbi.nlm.nih.gov/pubmed/15691636

http://www.ncbi.nlm.nih.gov/pubmed/9769400

As far as I know, you can only do radiation once, so if you get radiated now *and* went on to get DCIS or invasive breast cancer, they wouldn't be able to do it later.  Radiation can also complicate breast reconstruction (if you choose to do that at some point.)  We with LCIS and nothing worse also have bilateral risk for breast cancer, so it would only make sense to do any treatment bilaterally.  There is the potential risk of radiation to the heart (for the right hand breast).  

There is some controversy over doing excisional biopsies after finding LCIS on a core biopsy.  If the lesion seen on imaging EXACTLY corresponds to the core biopsy, then excision may not be needed.

http://www.ncbi.nlm.nih.gov/pubmed/21861212

Most papers I've seen say that out of 10 patients where they find LCIS (and nothing worse) on core biopsy, about 2 of these will have DCIS or invasive breast cancer when they are excised.

For most cases of invasive breast cancer, it isn't an emergency, but in most cases I get the feeling they like to start treatment (usually they start with either surgery or chemo) within a few months of diagnosis.  I waited 7 weeks to get my excision - it was over the holidays.  If I had the choice, I would have liked to have it done sooner so I'd have a better idea about my final diagnosis, even though the chance was 'only' 20% that I would have an upgrade in diagnosis.