Pleomorphic LCIS

OG56

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

Minnesota

OmahaGirl,

I always jump on this thread when I see there's been a new post. Wow, your story about their not being able to tell just what they were seeing under the microscope and then sending your samples to Cornell and finding PLCIS is just what happened to me - only mine were sent to Mayo - as you may have read. Thank goodness for these great medical centers! (BTW, my son is attending Cornell in Ithaca - all the way from Minnesota!) These decisions are horrible, aren't they? I am still wrestling with it, tho, like you I feel better about finally getting a little more info. I'd rather know if there's something bad going on inside my breasts than not know. The standard seems to be to treat PLCIS like DCIS, which means getting it all out. For me, it was unilateral, as they only found it in the one breast. Now that I know more, I'm scared about the other one and whether it lurks there too. Your post is also helpful to me, as it helps add weight to the idea that the PLCIS may harbor or hatch or whatever - invasive cancer. You've already had invasive cancer and now this crappy PLCIS which is a big scary unknown. Who wants to have a rare cancer that no one knows about? I don't think you're nuts at all. You'd be nuts just to ignore it. The alternatives are to watch and wait or to be proactive. Only you can decide what works for you. My husband has also had plenty of doubts about what I should do next. Getting input from the DCIS/LCIS expert doc in L.A. has been very helpful for me in moving me toward a decision. Also, since I already had a mastectomy and reconstruction on the otherside, in some ways it makes the thought of doing the other one easier. i had my recon in New Orleans, using my own tissue. If I have the other done, it will be a skin-sparing and possibly nipple-sparing mastectomy. They take out the insides and fill it back up. Not so bad. And not anything like "cutting off boobs." This is the 21st century. There have been advances. Good luck in your decision. I know, it sucks!

OG56

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...

beacon800

Hi, I just got my Dx yesterday of lobular carcinoma in situ, with some areas of stage 3 cells, which the pathologist indicated raised the concern of PLCIS. 

I am having an MRI wednesday and consult with the surgeon on 8/3.  I will have excision of the area (origianlly found by calcs on mammo and subsequent core biopsy) in mid august.

I have a family history of bc and am strongly considering bilateral mx.  Can you please tell me what and where is NOLA?

I live in the San Francisco area, and reading all the posts makes me want to send my path slides to Stanford for a second path opinion, even though my radiologist thought I don't need to.  My work is done at the Mills Peninsula Breast Center in San Mateo.

 Any advice deeply appreciated.  Thanks!

Minnesota

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!

seltzer

I found the doctors also to be very unwilling to talk about the specifics of the biopsy findings for LCIS.  (I had pleomorphic LCIS, too.)   To make a long story short,  it was onlly AFTER I had the PBM that the surgeon told me that is what her mother did and that she thought I did the right thing.  When the biopsy came back there was all kinds of LCIS everywhere on both sides. 

 It's very strange, the experience of the physicians not wanting to talk to the lab report people, or seeing their information as something separate and too detailed to bother a patient with.  I was lucky however to be urged by my colleagues at work (at USC) to press on getting to a good oncologist.  And the first thing she said was, I would NEVER try to talk you out of a PBM.

I wanted it for the peace of mind, and I have never been sorry.  Especially now that I don't have to take tamoxifen and I don't have to go back for mammograms.

So sorry this happened.  Just keep looking for good doctors.   I got a lot of good info out of the ones who will email...

OG56

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.

nash

Linda--don't know if this is the doc at SK you read about, but one of the surgeons there had this written in her bio section, and I thought it was interesting:

"One of our major efforts has to been to elucidate the molecular genetics underpinning the progression of lobular carcinoma in situ (LCIS) to invasive disease. Historical data suggests that LCIS is not an obligate precursor to invasive disease; however recent clinical and laboratory observations have re-opened the debate regarding the true significance of LCIS and its possible malignant potential. Our hypothesis is that LCIS is a heterogeneous lesion which can be characterized at the molecular level, and that molecular alterations present in LCIS can be used to predict the risk of subsequent ILC. We are currently testing this hypothesis using a variety of gene expression assays with the support of the genomics core facility. This project is supported by the Geoffrey Beene Cancer Research Center and Susan G. Komen Race for the Cure."

OG56

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.

nash

Linda, Tari King is the surgeon who stated the quote I posted above. I hope she finds some answers, too.

OG56

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.

Anonymous

Linda-----If you could please ask Dr. King  2 questions for me:  1) what potential does she feel that LCIS actually has to become invasive over time? (what percentage risk?)  2)  does she feel close monitoring with the use of tamoxifen a safe choice if combined with a family history of bc?

thanks, Anne

OG56

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

nash

Linda, wow, that's exciting that you've got an appointment with Dr. King.

Can you please ask her if she thinks pleomorphic LCIS is definately a direct precursor to ILC?  In other words, does it act like DCIS? I had conflicting opinions from my docs on whether I had to have bilat mast after my lumpectomy for pleomorphic ILC b/c of the remaining pleomorphic LCIS (I chose not to have the bilat mast, and I keep second guessing my decision). 

Thank you!

Minnesota

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!

OG56

Do you know if I can print this page off? I will tell her I am seeing her not only for myself but for all my other LCIS/PLCIS Sisters and we are seeking reassurance with our decisions. I saw Dr. Robert Allen today to discuss BMX with immediate recon with a DIEP possibly even skin and nipple sparing

I am so hoping that I don't have to sell the farm to do it, nothing anymore is ever "in network" even though I have excellent insurance. All of these consults are costing me a pig and a chicken and a cow! LOL Everyone in NY thinks because I grew up in NE that I am from the farm!

Minnesota

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...

nanannlan

hi, omaha

i also went to memorial sloan kettering for a consult, but with the radiologist dr. beryl mccormick.  the pathology department there read my slides as had new york hospital weill cornell.  three months previous, i had two lumpectomies at the same site where i had a stereotactic core needle biopsy.  my findings were that i had PLCIS, but after surgery had clean margins.  i am now 66 years old - i believe that has some influence on decision making as your chances of invasive cancer decrease as you age.  it was recommended by both memorial and new york hospital that i have a mammo once a year and and mri at the six month interval, and that i take tamoxifen which i have just begun.  dr. mccormick told me that the protocol at memorial is to treat PLCIS like LCIS and DCIS and not to radiate.  i am anxious to hear what dr. king has to say.  please pass on what dr. mccormick told me.  i hope that the right hand knows what the left hand is doing.  best of luck.

cleomoon

I wonder if classic LCIS is a precursor to PLCIS?

OG56

Well I hope to hell we get a couple of new answers out of "our" consult, I say we because we are all going on my  consult as far as I am concerned (:  I want to donate my boobs to science if she wants them, they might as well be usefull the little traitors.

Minnesota

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...

OG56

Well Minnesota that is a really nice way to think of our boobs, and true they have been sacrificed to save our lifes, I like that imagery. I must confess I really have always loved my breasts and they have been a great asset to have, I will miss them very much.

Minnesota

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!

OG56

Just a reminder to everyone we are going to see the specialist at MKS tomorrow. I copied all your questions and I am taking copious notes. We will be taking the train and subway too...no driving in Manhattan.

cleomoon

Hi Omaha,

I hope your appt with Dr. King went well.

Thanks for taking us all with you

nash

Thank you, Linda! Hope "our" appointment went well. Will be eager to get the feedback.

OG56

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.

nash

Thank you, Linda! I'm glad to hear that she feels PLCIS can be left alone--some docs treat it like DCIS and recommend mx if it's widespread. I hadn't done that, and keep second guessing myself.

Is her study only for local patients? I'd be happy to participate if it didn't involve me having to go to NY.

And thank you again for taking the time to haul all our inquiries along with you. You rock!

Minnesota

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?

Naner

I had a couple pathologists give an opinion as expert witnesses on my pathology between 2005 and 2008. The last one was given by Dr. James Connolly of Harvard in Jan. of 2008. I quote here from my attorney regarding Connolly's testimony:  He did see pleomorphic cells in situ, but felt that the invasive tumor was more classical. He admitted that the pleomorphic nature leads to a more pessimistic prognosis, but said it was hard or impossible to quantify how this would affect survivability. 

In other words, he didn't seem to know how PLCIS would behave. I had an over 3 cm. ILC with in situ nearby.

Long story short- it's behaved very well indeed. I lost the court battle but I'm winning the big one!

2002 Aug. 7 (age 52)  3.6 cm.ILC +5/10 nodes, Stage111a, er/pr+  BDM, AC, Taxol, rads, Tamox. Arimidex