Pleomorphic LCIS

Hi Omaha Girl!

As I recall, you have your next appointment with Dr. King on Monday, so I want to be sure to try to butt in on it again! I did send her an e-mail offering up my body for any study!

I do have a follow-up question, if you have a chance, and that is regarding the risk for contralateral cancer. I believe she quoted you a stat for risk, given IDS. My question is about risk, given PLCIS, and given that there are no studies, and that it seems to be a more aggressive cancer.

Also, I noticed that she gave a talk at the Cornell/MSKCC oncology seminar last November on prophylactic mastectomy. I'm wondering if the content of her talk is available anywhere for us to read, since that is the course some of us are considering.

Thanks again Linda! I sure hope you appointment goes well. Is your biopsy this Monday, or will that be at another date?

This is a copy of the Practice Guidelines in Oncology for 2009. http://misc.medscape.com/images/586/406/Breast-Medscape.pdf  

It addresses some of the issues that have come up in this thread.  I'll quote some of it, but there is more in the guidelines, so you may want to look at it yourselves.  The levels of evidence and bibliographies are helpful, too.

In terms of having the other breast removed it says this.  "The risk of an invasive breast cancer after a diagnosis of LCIS is equal in both breasts.  (approximately 21% over 15 years)  If mastectomy is considered as a risk reduction strategy,  then a bilateral procedure is required to optimally minimize risk."

In terms of PLCIS it says this.  "There is evidence to support the existence of histologically aggressive variants of LCIS (eg, "pleomorphic" LCIS) which have a greater potential than classic LCIS to develop into invasive lobular carcinoma.  However,  outcome data regarding treatment of patients with pleomorphic LCIS are lacking, due, in part, to a paucity of histologic categorization of variants of LCIS.  Therefore,  recommendations on the treatment of pleomorphic LCIS as a distinct entity of LCIS have not been made by the Panel."  (the boldface typing is my addition)

In terms of the use of tamoxifen to lower risk it says this.  "Women with LCIS, whether they undergo observation only or are treated with bilateral mastectomy, have an excellent prognosis.  Recent data from the NSABP Breast Cancer PRevention Trial show that tamoxifen given for 5 years is associated with an approximately 46% reduction (hazard ratio 0.54; 95% CI 0.27-1.02) in the risk of developing invasive breast cancer among women with LCIS." 

Linda---if you get a chance to ask Dr. King, I  would be very interested in her thoughts on close monitoring and tamoxifen when LCIS is in combination with close family history of bc (mother). Thanks----Anne

Okay I left the house at 7 a.m. and arrived home at 7:30 p.m. I am tired!  Anne I still did not get her to answer your ? because she was 2 hours behind and I only got to hear the pre-op shpiel, but I will get your ? answered, I am sorry.

Interesting that Cornell saw pleomorphic but Sloan did not..hmmm I am confused and today I am scared all over again, I don't want cancer again damnit so it had better be B9 in both breasts or I am going to kick someone's butt, I just don't know who's.

Linda,

Glad you got yourself thru yet another day of this crap! Rest, rest. Get back to us only if, and after, you feel up to it. We're all sending positive vibes your way. Hope you get good news!

Well yesterday I had my bilateral biopsy's. I feel like I basically had 2 more lumpectomy's and I really hurt today and thank god BS isn't stingy with pain meds. Funny thing happened in the waiting room though, a woman waiting for surgery (lumpectomy) came over sat by me and we began to talk and due to last years experience I was able to give her words of encouragement and I told her to look us up here when she felt better. I won't know anything for another week, but thanks for all the support over the last few months.

So glad you have this behind you now!

Okay I need a little pep talk. I went to the BS today to see what the path report said about both my excisional biopsy's (lumpectomy's!!!!!!!!) and because of all the junk in my tissue it really makes the tissue difficult to say 100% no carcinoma. So, they are doing more sections. However, the preliminary reports on both say b9 but not boringly benign.

Right Breast reads:LCIS classical type, extensively involves foci of sclerosing adenosis. Intraductal papilloma, Fibroadadenomatoid changes and stromal fibrosis. Microcalcifications are present in association with benign breast epithelium and focally with LCIS

Left Breast (Good One) Focal Pleomorphic LCIS involving large ducts and with central necrosis.

Classical LCIS extensively involving sclerosing adensosis and radial scar.

Calcifications are present in the in situ carcinoma . The margins are negative for pleomorphic LCIS. 

Note: the specimens are extensively involved by classical LCIS with extension into sclerosing adenosis. On the Lt. side focally the cells are larger, plemorphic and show mitoses, involving large ducts and with foci of central necrosis, consistent with focal pleomorphic LCIS. An E-Cadherin stain is negative in these foci, confirming lobular phenotype. No invasion is seen on the H&E slides but given the % of involvement of sclerosing adenosis, stains for myoepitheilial markers are being performed.

My BS thinks that because she can watch the calcifications on the Lt. breast I don't need MRI's just digital mammo's and exams. My diagnosis last year was IDC... I know this stuff has been in both my breasts for many years, but it scares the hell out of me, I don't ever want it to turn into ILC or IDC!

I would love for my LCIS friends to weigh in with their thoughts on my situation. 

Thanks and sorry for this long post.

Omaha Girl,

Sorry your report is so full of pathobabble! (Did I just coin a new term?!) I can't help you at all because you know I'm worried about having all the stuff in the other breast than the one they found the first bad stuff in, and that's even after my recent digital mammo was declared clear... I just feel like if they would do some excisions, they'd find more of that crap. And my new onc does not even recommend breast MRI's in my situation, just yearly mammo's, eventho I know some of the gals in my position out there do get 6 mo follow-up and with MRI's. I just don't get any of this!

Thanks everyone, I know that is some serious pathobabble LOL. Eve this is all to worrisome and I guess our surgeons think the same the + thing might be that this stuff has been there forever and maybe with luck on our side it won't develop into anything ever again. I don't have an oncologist, but I am about to be given one as soon as this is settled.  Thanks Cleomoon for the site I will read and see if I can further educate myself. Do I wish I didn't even know all this junk is in there??? maybe.

Thanks nanannlan, my dr. is going to hook me up with an oncologist at Sloan.  I am feeling better today and just being quiet and thankfull that for now all is well.

formykids,

I don't think they really know that PLCIS would necessarily be fast growing. I think the aggressiveness description is more because of what they know about PLC and their theorizing that the PLCIS might lead to PLC, which is more aggressive. I don't think there have been enough studies of this for them to have drawn any conclusions about PLCIS itself being fast growing or not. Also, I don't know how accurately they can measure your area of PLCIS just from the biopsy and MRI's. The different numbers you quote could be due to measurement error rather than that the actual area has changed over that amount of time. I know that the estimated size of my DCIS/LCIS/PLCIS, based on the needle biopsy and then the breast MRI, was different than what it ended up being once they got in there. My cancer ended up being about 4.5 centimeters. I have small breasts, and the lumpectomy was not adequate to get clear margins, so I ended up needing a mastectomy. I had an excellent delayed unilateral breast reconstruction in New Orleans and really do not feel as tho I had a mastectomy at all. I am presently considering prophylactic surgery on the other side - no one told me at the time of my lumpectomy and mastectomy 3 years ago that my cancer risk in the other breast was elevated due to the LCIS, and no one knows yet if PLCIS could similarly indicate increased risk in the other breast. Good luck with your surgery on Friday. The important thing is that, at this point, it seems as tho your cancer is not invasive, which is very good. Also, know that if mastectomy becomes necessary, you have many reconstruction options, just be sure to do plenty of research about those options and about the surgeons offering them. There's a great group of ladies posting on the reconstruction portion of bc.org. Hope this helps!

Cathy, I am thinking of you.  I hope everything goes well tomorrow.

Cathy good luck tomorrow. Hope everything works out for you.

Cathy

Sorry you had such a long day. They do the wire localization to get as close to the area from the original biopsy. I know the wait can be difficult so we are here for you. Is there any way possible that you can have your results sent to your primary doctor at home to eliminate yet another trip. Again I am praying that things work out for you.