Pleomorphic LCIS

Hello I have to jump off the IDC thread and join all of you very smart, self educated LCIS ladies. Quick Hx. May 2008 routine Mamo highlights micro calc's, biopsy results malignant IDC .5 cm with a 2mm invasion. Lumpectomy, Mamosite radiation and have been on Arimidex 1 year. Dec.08 6 month digital mamo is clean...1 year post op new BS here in NY orders my first MRI. Both breasts light up...MRI guided biopsies both breasts (owwww) first lab can't decide DCIS or LCIS so sent all slides to Cornell, final results no invasive cancer but I have PLCIS and Classic extensively in both breasts. Now I think last years IDC  was started by this other nasty little monster.  I am frightened but I am scheduling a bilateral mastectomy and possibly a DIEP if I am a candidate, or maybe no reconstruction, I feel 98% conflicted but the 2% feels much better after reading this thread. Does anyone want to weigh in on my decision??? I would love some input, for real(:  My DH asked me if I was nuts "why would anyone who doesn't have cancer cut off their boobs?" He is a lovely man but he is a man! and he is scared because my sister-inlaw has stage IV with mets and went to hospice this week....and I have sick boobs again! How did you find recovering from a bmx without reconstruction? Sorry I just have a million ?'s I'll shut up now LOL

Thanks Minnesota, I actually was just in Ithaca and walked all day around Cornell's campus it is amazing. I spoke with my old BS in Omaha and he said it was certainly reasonable to geta BMX since now we know what caused last years cancer. However he is very breast conserving and said " you already had one, so the odds are less that another invasive cancer will show up in that breast, but of course we do have to worry about the left .....I just cannot stand the Lets wait and see.  If the Diep isn't possible for me I may go to NOLA and see what else I want to do. Good Luck and thanks for the conversation...

Beacon,

If you want a second opinion, I think you should get one. My second opinion was from Mayo Clinic (the pathologist at the hospital here sent my slides there himself because he wanted more specialized eyes to look at them), and even after that, my oncologist said he wouldn't blame me if I wanted yet another opinion, given how unusual this whole PLCIS business is. I told him that I trusted Mayo's opinion. Having Stanford take a look certainly will not hurt. I recently corresponded with an oncologist near L.A. who specializes in DCIS and LCIS. His unofficial suggestion to me was based upon the fact that he knew my slides had been read at Mayo. This tells me that the diagnosis is tricky and you need to have confidence in the results. 

I think, given your family history, it is reasonable that you explore your surgical options. Have you had genetic testing for the BRCA gene? A great source of information on familial cancer is the organization F.O.R.C.E. (Facing Our Risk for Cancer Empowered). They have an awesome website and online forum like this one. The link is:  http://www.facingourrisk.org/messageboard/viewforum.php?f=3 

NOLA stands for New Orleans, Louisiana. We use the abbreviation on these boards to refer to the Center for Restorative Breast Surgery in New Orleans. They are a premier clinic for breast reconstruction. A lot of us have gone there and will sing their praises to the high heavens! If you are considering bilateral mastectomy, you might consider having your surgery there. Their website is: http://www.breastcenter.com/  Lots of ladies have traveled there from California. I traveled from Minnesota. It was so, so worth it.

Good luck with your decisions. Let us know what you find out, as we all are learning, and there is precious little information!

I just read in a news letter from Sloan Kettering that there is a female oncologist there who's main work is with LCIS and PLCIS. I will try to find the paper and add her name, but I fear my husband threw it away. I have a call in to MSK to see if someone can give me her name. Maybe I can donate my breasts to her research.

I finally found the article from Sloan Kettering her name is Tari King she is a BS the article states " An expert in the surgical management of breast cancer. Dr. King who has an active interest in translational research, is the principal investigator of the Breast Surgery Research Laboratory. A major focus of her research for which she recently received an award from the Society of Surgical Oncologists, is elucidating the molecular genetics of the invasive breast cancer risk assoc. with LCIS. I hope she does all of us some good.

Well I called Sloan today and told my intake worker that if I could not see Dr. King than I was not coming and she called me back and said she wanted to see me too. So, next Thursday I will meet with her to discuss the future for all of us "rare" girls. If there are ?'s you want me to ask or think I should ask please let me know and I will. I feel that most of you are more knowledgeable about this disease than I am.

I will ask her Anne and hopefully she will let me tape what she say's but I will have my DH with me and he is still has the memory of an elephant, not like me I have the memory lately of a flea LOL

Omaha  Girl,

This is great! I'm so glad you're getting a consult with this doc! Please tell her that there are a host of PLCIS ladies here who might be happy to offer ourselves or our slides for further study! Here is my question, as I laid it out for Dr. James Waisman, a DCIS/LCIS expert is L.A. It's based on all the info I've gathered from this thread and summarizes pretty well, I think, the understanding all of us on this thread have of this condition. He even wrote to me that it was as "well articulated an understanding of PLCIS as you would get from a breast cancer expert," so we can all pat ourselves on the back for doing our research. I'd be eternally grateful if you could find out what Dr. King thinks:

My understanding is that PLCIS has only recently been described, is very rare, and the protocol is to treat it like DCIS rather than LCIS. What I can find written about PLCIS, as you know, is almost totally about epidemiology or pathology of the cells and that this appears to possibly be a more aggressive subtype of LCIS or a different type from DCIS or LCIS altogether. Given the rarity, uncertainty about treatment, and possible aggressiveness of this animal, as well as the fact that LCIS is often present in both breasts and that its presence in one breast increases the liklihood of IBC in the other, I am considering prophylactic surgery for the other breast. The question is whether mastectomy is reasonable or recommended, given the circumstances of a PLCIS diagnosis. I know there have been no studies looking at different treatments or long-term follow-up, so I realize there are no statistics and that any conclusions are based on a combination of logic and guesswork. In that spirit, I'm asking for your best guess, based upon your knowledge of both DCIS and LCIS, and given that this PLCIS animal may lie somewhere in between. 

Thanks Omaha Girl!

Omaha Girl,

LOL! I grew up in Wisconsin, so I guess everyone would think I raised cows. Now that I live in Minnesota, everyone thinks I say my 'o's funny! "Minnes-O-ta!

I've printed off these pages by copying and pasting into a word file. If you don't know how to do that, I'll fill you in. My son taught me...

I wonder if classic LCIS is a precursor to PLCIS?

Omaha,

You're great! 

Yes, they sure can seem like "little traitors." But on the other hand, our duct and our lobe walls did stand tough and kept those bad cancer cells from invading the rest of our breasts and potentially our bodies! If you think about it, our breasts kind of sacrificed themselves for us...

Omaha,

Well think of them however you need to think of them. Maybe it's better to be mad at them...But you can get brand new ones, filled with new stuffing, and they'll never, ever get cancer!

Hi Omaha,

I hope your appt with Dr. King went well.

Thanks for taking us all with you

Okay Ladies I took notes and typed out our questions. She answered about 1/2 of what we wanted to know and I will meet with her again in 2 weeks and I will ask the rest.

* Sloan does not differentiate between classical and pleomorphic. Though they know pleomorphic cells are larger they are not sure it's personality is that different, so they call it all LCIS.

* Dr. King gave me a hx. lesson on LCIS it was first noticed under the microscope in 1914 and because it looked alot like DCIS they named it LCIS because it hung around in the lobular area of the breast. They used to always do mastectomy's for LCIS and DCIS. 

 That in the 60's (I think) they took breast tissue from 1000 of women who died but not from BC. 10% had LCIS

Until just recently they never noticed or identified the larger pleomorphic cell, so now they are studying it's personality and asking the question how different is it. So, far there have been no long term studies of women with LCIS.

She feel's that women should with  LCIS be on anti estrogen meds because it is always ER+. That it should help keep it under control. That simply having LCIS is most definetly not a reason for a BMX even with the identification of pleomorphic cells.  

Minnesota the paragraph you submitted had a sentence in it that I also read in the document that said it increases the liklihood of IBC she stated that is a type 0 and that it should say IDC.

The papers that have been published are not supported by any true studies, and we should be careful.

She has asked me to slow down and not do a BMX, but to do a better tissue study of both my breasts. I have agreed unless they find cancer in my left. ( I had it in my right last year)

LCIS is at this time only recognised as a risk marker. 90% are bilateral and multicentric

I am joining her study, in the hopes that it will help us all.

I don't know if this helps but I hope it does.

Linda,

Thanks so much for asking our questions and for your great report! I'm also curious about what she means by "better tissue studies." I would be willing to travel to NY if it might help in the study or give me more info. So do you think she's implying that she might find something more indicative of what you should do, if she does "better" tissue studies? Do you know what that would entail? Biopsies?