Pleomorphic LCIS

I have extensive PLCIS left over in my breast after the lumpectomy to remove my pleomorphic ILC. Tumor board hemmed and hawed for quite awhile, first recommending bilat mast, then backtracking and telling me I could leave the PLCIS in there. But one thing I wanted to point out was that my surgeon did tell me that the radiation I was having for the PILC would have no effect on the PLCIS.

I'm 45 yrs old and just got a diagnosis of pleomorphic LCIS (PLCIS) along with a bunch of other things like complex sclerosing papillary lesions and flat epithelial atypia - all found on steriotactic biopsy prompted by microcalcifications on mammo and positive BSGI scan. Radiologist referred me to surgeon for excisional biopsy. I have appointment Tuesday w/ BS and Oncologist. I'm just beginning this whole process. I'm just beginning what looks like will be quite an uncertain path...

I had my consult at Mayo Clinc on Thursday re: my PLCIS. I am still processing what I was told, which wasn't much.

I will not relate the thoroughly frustrating time I spent with the gal who was obviously an intern and told me that my chance of getting cancer in my other (non PLCIS) breast was 10% - which I know is absolutely not true (okay, I'll relate a little bit). I told her I'd seen quotes of the risk in the contralateral breast as much higher than that (7 X or more the general pop.). She asked me where I got that info, and I pulled out my article on LCIS from Mayo online. Then she said, well that's if you've had ILC. I pointed to the title of the article: Lobular Carcinoma in situ. Then she said she'd have to consult with the "breast specialist" and left my husband and I in the examining room for 45 minutes. I thought this must be good, as now she was really discussing my case with someone who knew.

She came back and began drawing pictures of the breast and the ducts vs. lobes. She said I should just ignore all of the "big words" in the pathology report and that "pleomorphis LCIS" only had meaning to pathologists and had no impact on me or my cancer. It was only description, with no impact on treatment. I had a list of questions, which I tried to go thru with her, such as if PLCIS would more likely be a marker for PLC, etc. It was so frustrating that I can't even convey how upsetting the whole thing was. It felt like she was talking down to me and thought I was looking for bad news, or something. I told her that I was now more confused than ever.

She left the room again and I burst into tears (which is not like me, believe me!). Here I had come to what I consider the best clinic on earth, and this is what I was getting! These were the folks to whom my slides were sent 2 years ago who identified the PLCIS and spared me radiation and chemo, after all! Sorry this is getting long and is sounding like just me venting (which I am).

Finally, the "breast specialist" comes in. Finally I felt I was being heard a little bit more. But the thing I realized is that, unless a subtype of breast cancer has also had differential treatment trials and replication of those trials, it does not exist for the oncologist. The classifications are just words. PLCIS is the same as LCIS for them.

In retrospect, I think it never occurred to the young intern that I might be asking about the advisability of PM on the other side. She was a very young, attractive woman, and eventho I'm 99% certain I mentioned this as something I was considering, perhaps she blanked it out. And if she didn't consider this as a viable treatment, why was I even inquiring about a subtype of LCIS for which there is no other treatment than there is for plain old LCIS? Why not just quit worrying about it?

The guy, on the other hand, understood what I was considering. Regarding whether PLCIS is more likely a marker for PLC than other forms of invasive cancer, he very barely indicated it might be - but so wishy washy a response that my husband does not remember this at all. This was one of my big questions, since PLC seems to be a very nasty cancer. The doc would not acknowledge that PLCIS and PLC are any more aggressive than any other types - didn't answer one way or the other. In fact, he said that they don't even differentiate PLC from any other kind of breast cancer. Again, I think because there is little research.

He said that PM is a "reasonable" option, along with the option of careful surveillance. He seemed to have a lot of faith in surveillance and catching anything else early. Asked what he'd recommend for his own wife or daughter in my circumstance, he said he's recommend surveillance. He told me that the risk of cancer in the other breast is twice the general population - so 25%. Surprisingly, he is not a big fan of tamoxifen and said it has not been shown to increase long-term survivial - which I do not get at all, since my onc says it cuts recurrence rate in half.

I got the feeling that most of the advantage he sees of PM in this case is psychological, tho I asked him several times if it made medical sense as well as emotional. He conceded that it did, and that, then, the risk of cancer in the other breast is less than 5% vs. 25%, and that's about "as good as it gets."

So that's where I'm left. If I remember anything else, I'll add more. This has surely been emotionally draining. I thought I wanted to be told what I should do. Then when I listened to the intern, I felt she was telling me what to do - just go home and not worry, and that she was taking away my choice for a PM. I found that very upsetting, plus I had no faith in her knowledge whatsoever. With the breast oncologist, I felt that he was giving me two very real, logical choices. But he certainly didn't tell me what I should do. And, in fact, he said he would never tell a woman that she should have a PM because it was a personal decision. So now I'm back to uncertainty. And maybe knowing that I really didn't want to be told what to do. And with perhaps a little more faith in surveillance - but maybe misplaced... We're going to get another opinion. But where do you go from Mayo?

I was reading this thread and thought I'd just share a conversation I had with my oncologist.  Before I do, please understand that my situation is NOT like yours.  I was diagnosed with invasive pleomorphic lobular cancer in my left breast.  My pathologist said it started as DCIS, was not found on mammograms (because there were no calcificationsn and no necrosis) then progressed to PILC, was still not found on mammograms for years.  After chemo and mastectomy for the PILC was completed I had a conversation with my oncologist about having my other breast removed.  I asked him if having MRIs would catch breast cancer in the other breast before it becomes invasive (as mammograms certainly didn't help).  HIs answer was that it would not catch LCIS before it became invasive.  It would probably catch DCIS before it became invasive.  Having had one invasive breast cancer, I didn't want to risk another.  I have had the other breast removed, too.

I received a diagnosis of DCIS which was changed to LCIS after a lumpectomy. After the pathology I was told it was PLCIS. My onco surgeon took my case to a tumor board and she told me either the bilat mast or monitoring every 6 months would be the best two options. After much discussion plus a meeting with a medical onco I made the decision to have the bilat mast.

I was told the LCIS only is found under a microscope so I didn't want to have the 6 mo checks waiting to see if it had become invasive. Just didn't want to play those odds. I also had 1 mm margins on the PLCIS lump that was removed so expect there to be additional LCIS in one or both breasts.

Maybe with more diagnoses of PLCIS and more women chosing different options there will be more research done and more consensus of opinion in the future.

My surgery is June 16. Thanks for everyone's input. It was helpful hearing what you all have been through and what the various docs have said.

After consultation with radiation oncologist, he presented my case to breast tumor board.  He advised me on 6/5 that the consensus was not to offer radiation.  He said there was heated discussion, and disagreement.  He personally would offer radiation for the PLICS.  I am leaning towards radiation followed by Tamox.  Has anyone had radiation for PLICS?

petdoc

will write a longer response later, but for now... i had plcis (found in core needle biopsy), followed by two lumpectomies to remove it to show clean margins.  my breast surgeon told me to have radiation.  since i did not have a good relationship with her, i let everyone i know my predicament.  finally got in to see two top radiologists in new york city.  the tumor board at the first hospital - after reviewing all slides, etc. - did not recommend radiation.  neither did the second hospital.  in fact, they never radiate plcis.  nor do they radiate dcis.  so, i decided to go with the decision to not radiate and to have a yearly mri alternating with a yearly mammo and sonogram.  i found an oncologist whom i like and she is having my blood tested to see whether i can metabolize tamoxifen; and because my ethnic background has a high percentage of breast cancer, to have it genetically tested.. i think it is important to find an oncologist that you like and trust so you feel comfortable with whatever decision you make.  i am currently following a two month tibetan herbal treatment to cleanse my blood down to the marrow level.  i was also advised to do daily healing mediatation.  

Hi, Minnesota--

My tumor board was based at UC San Diego, with some members of an outside oncology group sittting on it as well. Like I said, my surgeon trained at MDA--they have their surgical handbook online through google books, and here's a link (sorry it's not live) to their very brief section on PLCIS:

http://books.google.com/books?id=tG0D2I2BmAIC&pg=PA17&lpg=PA17&dq=pleomorphic+lobular+carcinoma+in+situ+MD+ANderson+handbook&source=bl&ots=BF4bbHO5VB&sig=emZA2U4M_d2N4bqDqvY2KMKv6gg&hl=en&ei=3d0-SsfsI4eINrjolOgB&sa=X&oi=book_result&ct=result&resnum=1

In case that very convoluted link doesn't work, basically, they just say that they think PLCIS progresses to PILC, and therefore should be excised. Since my PILC was surrounded by PLCIS, my PLCIS probably did progess to PILC. That being said, following my lump/rads, the area around the lumpectomy site is completely stable 2 years out.

If you google pleomorphic LCIS, it seems that most of the  studies have ben done at MDA. Just from my reading, it appears they are the only institution in the US with a clinical interest in it. 

I just switched to a new onc at the beginning of the year, and she blew the PLCIS issue off. She didn't give a reason--she just was comfortable with monitoring it.

Nash,

Thanks so much for the links. They work. I'll definitely be doing some reading!

Eve

Cleomoon,

You shouldn't be at all embarassed for asking for a second read. First I had a diagnosis of DCIS, and then it changed to PLCIS. The pathologist here sent it out to Mayo for that second read. I don't think anything is clear where LCIS is concerned. This whole thing is driving me whacko!

Macksix,

Thanks so much for your post. Any additional info on this is much appreciated! Can you talk a little more about what your oncologist had to say about this and about the risk factors, and do you have a link to the Van Nuys risk index? What is his take on the mastectomy and are you having bilateral?

Thanks!

Macksix,

Does your recent oncologist think there is a link between PLCIS and invasive lobular cancer?  What is his opinion on having the bilateral procedure vs. just on the side the PLCIS was found?

Thanks!

Mack6,

Thank you so much for your response, and especially the quote from your report. It is extremely helpful to me, tho of course, scary. But what is there about cancer that isn't scary? It's all about gathering information and going with one's best educated guess, especially when dealing with a cancer about which there is so little information. One of the questions I have had is if it is likely that PLCIS would evolve and/or be a marker for PLC - which does seem to be an especially bad cancer. This is the first time I have heard a definitive response from an oncologist that there is a relationship, as seen at the molecular level. Also, the info about that cancer not being especially responsive to hormonal therapy is significant. Those are two very important points that will weigh heavily in my decision whether or not to have prophylactic surgery on my other breast. I can't thank you enough!

Macksix,

I do have pleomorphic LCIS, as dx'ed by Mayo Clinic. At first it was thought to be DCIS, but then it was sent to Mayo because it was so unusual looking to everyone here, and they gave the amended diagnosis. I had unilateral mastectomy on the one side and didn't actually realize I had PLCIS until much later, after my recon at NOLA, and when I finally looked at my pathology report. Since then, I've been trying to understand what PLCIS means. I was treated as tho it was DCIS - couldn't get good margins in lumpectomy, then mastectomy. I didn't realize until later that I actually had LCIS and that it increased my risk in the other breast. I've been researching this with much frustration. Coincidentally, you met with my friend Sandy about NOLA, and she knew I had PLCIS and that your doctor and hers (the same) specialize in DCIS and LCIS. I subsequently e-mailed him about this and the advisablility of a PM on the remainng side. He was very helpful and informative. But I  did forget to ask him about the PLCIS and PLC connection, and he also had not mentioned hormone therapy being not as effective on PLCIS - which is what I have been on. He also quoted me the 30% figure. I have dense breasts. My PLCIS was 4 1/2 cm and it barely showed up on the mammo and ultrasound, even tho I have small breasts. There was no lump. They found another area in the same breast when they did the mastectomy. So, yes, I do have pleomorphicLCIS and my concern at this point is living with the risk of it occurring in the other breast and not being detected until it is large or has possibly evolved out of my lobes and ducts. I'm not that old and have many years ahead to be monitoring this - not sure I want to have the risk and worry. Especially when I know I can head down to NOLA and have a great cosmetic outcome. 

WoW. Small world. Yes I recently met Sandy as a mater of fact we are going to the FORCE meeting together this morning.

Yes it has been very frustrating to get information on PLCIS. LCIS is not that common but PLCIS is very rare. Many patients are first dx with DCIS since the molecular structure looks the same. It has only been since 2003 with the E cahden stain that they can tell the difference. The lack of this stain signifies that it is lobular in nature.

With that being said lobular cancers are the sneaky ones that are hard to detect since there is no mass or lump. I have PLCIS in my right breast and both oncologists recommended mastectomy.  I was told that my left breast is at greater risk. I have large (36D) fibrous, dense breasts and I just don't want to risk it. I would have to have surgery anyways on the left breast because I want to be smaller and I would need to adjust the left breast so I have decided to go with the bilateral.

I am hoping to have my surgery at NOLA and have all my paper work etc in to them but insurance may play a part in whether I have the surgery there or not. What type of surgery did you have and how was your recovery?