Pleomorphic LCIS and Research

Thanks for the link, cornellalum! 

I certainly am no expert, but most places seem to consider PLCIS more aggressive than classic LCIS. I would guess that more pathologists/oncs would consider PLCIS more of a precursor-type  (as opposed to a risk factor-type) situation than classic LCIS.  It is not invasive.

So, I would guess that PLCIS would be 'farther along on the spectrum' towards carcinoma, but still atypical hyperplasia, as would any type of DCIS - assuming you classify only invasive carcinomas as carcinomas.  (If you have  ductal or lobular cells that have atypical hyperplasia, its not the hyperplasia that puts you at much higher risk; its the atypia.  Hyperplasia (LH or DH) may put you at higher risk, but if it does,its barely measureable. Its the atypia adjective that puts ALH women at higher risk of invasive breast cancer, and the risk of classic LCIS is higher than ALH, and it sounds like PLCIS is higher than classic LCIS.)

But I don't know whether ALL atypia of any cell type puts you at higher risk.

While it sounds like more people are guessing that some types of apocrine development may put you at higher risk, not all do.  For example, in the paper you cited, it says 

Cytological features of apocrine differentiation are important factors pushing the pathologist to err toward a benign diagnosis. Despite the architectural similarity of low-grade DCIS (nonapocrine) to apocrine papillary hyperplasia, few if any pathologists would regard the latter as a type of DCIS.

So it sounds like DCIS is non-apocrine.

The final paragraph of the paper is

The apocrine cysts showing papillary hyperplasia have long been a controversial lesion, and numerous studies have investigated their association with breast carcinoma. The molecular cytogenetic data presented here showing that they can exhibit a range of genetic alterations seem to indicate that at least a proportion of these lesions may be clonal neoplasms, and that given the considerable overlap in copy number changes with the apocrine malignancies, these papillary lesions may represent nonobligate precursors of apocrine DCIS and invasive apocrine carcinoma. At this stage, the clinical significance remains uncertain and follow-up studies will be required to evaluate this issue.

So it sounds  to me like these authors in 2001 were saying that apocrine cysts showing papillary hyperplasia may be a nonobligate precursor, like they say of classic LCIS. 

It sounds like a lot is controversial.  

I will have to read more.  I haven't read much about apocrine, though I certainly have apocrine involvement /sclerosing adenosis on my pathology report (with classic LCIS and ALH.)

Leaf,

I'm sure glad you're over here on the LCIS thread - you have been an absolute wealth of info. We all benefit so much from your knowledge! Thanks!!!!!

Hi

I just spoke with my genetics counsellor to see if in lieu of my latest developments of ILC, I might now qualify for the BRCA 1 & 2 testing.  Unfortunately it doesn't change anything, there isn't enough family history.

Anyway, while I was speaking to her, she told me there is another women somewhere in the area who also recently was diagnosed with PLCIS.  I have asked the counsellor to give her my number if she would be interested in talking/meeting.  I will ask her if she is interested in the possible study that Sloan might be doing.

Hi OmahaGirl

Just wondered if you have heard anything more from the BS at Sloan about starting a study on PLCIS?

I finally after a few weeks received my pathology reports and my PLCIS turned into/contained?  Pleomorphic Invasive Lobular Carcinoma and not classic Invasive Lobular Carcinoma like I originally thought.

 Hopefully Sloan starts this study on this new entity in the breast cancer world.  There certainly isn't enough new information about it.  I am going to be having bilateral on Jan 12 and am wondering if the pleomorphic aspect of all of this is going to be steering me towards chemo, whether there is lymph node involvement or not?

Hi Minnesota

I will let you know how it goes.  At this point the PILC, PLCIS, ALH is all on the right side.  In October during bilateral MRI, they have noted seeing something on the left, BIRAD 3, with follow up in March.  I am not going through this again, and hence doing bilateral mastectomy. I was just told today that my follow up to get the results from the pathology won't be until Feb. 1.  So I wait yet again!! 

Unfortunately, I am unable to get any of the details for surgery and I am totally frustrated.  At this point all I know is the surgery is on Tuesday January 12, thats it. I don't know what time, I don't know how long I am in hospital, I don't know how long I will have to stay in Toronto,(which is 900 miles away from home for me). I don't know when I should be booking flights for, how long to be making childcare arrangements for. Can you tell I am totally PO'd?

Cathy

OK - here's the latest from my breast surgeon after today's appointment.  He said that the problem with PLCIS research is that there is only pathological data out there (which looks at PLCIS from a molecular standpoint), and no clinical data (which looks at treatment outcomes).  The pathological data suggests that PLCIS is like both ILC and high grade DCIS, which is why studies have hypothesized that it is more aggressive than classic LCIS. However, since there is no clinical data, doctors are differing in their recommendations.  He actually spoke to Dr. Anderson at the University of Washington (who authored the slides in Omaha Girl's link in the other PLCIS thread) after I forwarded him the link.  Apparently they already knew each other.  After talking to him, my doctor now does not think that it is possible to get clear margins on PLCIS.  He believes that it is most likely multifocal and bilateral. (Minnesota - there's my doctor's opinion for you).  He is back to recommending tamoxifen and monitoring.

I had a long discussion with him about mastectomy, and he said that if that was where I wanted to go, he would do it. He agreed that if I was going to do a mastectomy, it made sense to do it bilaterally, and to do a sentinel node biopsy on both breasts.  He stated that his experience was that more women are opting to get a mastectomy in the past few years.

He stated that he understands the concern about PLCIS, and said that women who have it probably know more about it than most breast surgeons. He acknowledged that there just isn't a lot of information about it out there, so we have to go with our gut.

I am going to wait for the report from Sloan-Kettering, but I think I have pretty much decided on a bilateral mastectomy.  And honestly, just coming to that point has brought me peace.  I'm scared, but I want to take whatever steps are necessary to eliminate this unknown risk.

I know the rest of you who have PLCIS understand what I'm talking about.

Minnesota - I hope everything goes well for you tomorrow.  I'll be thinking about you.

Cathy - interestingly, my doctor asked what my response would be if we did a bilateral mastectomy, and found nothing else besides PLCIS and classic LCIS - would I be happy or sad?  My response was that I would be happy, because it would mean we got it before it had a chance to "morph" into invasive cancer.

Do you think that your PLCIS turned into PILC?  It seems logical. And yes, I would imagine that you were very glad that you were able to find the PILC, since it is very good at hiding from current screening tools, especially mammograms.

I am looking forward to hearing from Omaha Girl too.

I hope that your road to surgery has gotten a little smoother. It sounds like you are having your issues.

Chris

Cornellalum, and all you guys!

Thanks so much for passing on to us what your doctor said - I especially am grateful for his professional opinion about bilaterality. I think I have pretty much decided to do the other side - but it is the tiny remaining bit of uncertainty that drives me batty. Yesterday I had my D&C. My doc said it didn't look like she expected and it has been sent to pathlogy. She says that it may be normal, but she's just not used to doing this procedure on perimenopausal women (What? Why? Because she's so young? Because they just jump to hysterectomy with women my age?). Anyway, I get to worry now about uterine cancer. Thank you tamoxifen! I hate a love/hate relationship with that drug! I'm off it as well as Evista, so now sit with no back-up protection again cancer in the other breast. This helps push my decision a bit. Cornellalum, if you want to know where they do some good recon - I know the place! It's where I'll go when I get past dealing with my uterus... 

• Minnesota - I'm sorry you're dealing with these new worries.  I'm sending good vibes your way for good news quickly.  Did they tell you when they would have the report?

And thanks, but I'm passing on reconstruction.  I'm just not interested enough to go through all that.  I figure I'm going to go buy myself a nice pair or two, and I can wear them when I want.  I don't know, maybe at some point in the future I'll decide to do something more permanent.  Probably not, but we'll see how much I miss them, and how much of a pain it is to take them on and off all the time.  One concern I have is that my tummy will probably look a lot bigger to me when my boobs aren't blocking my view of it!   Well, it will give me something else to work on.

Macksix6 - thanks for sharing your experience.  It's always comforting to hear from someone who went through the same thing, and is getting on with life.  It's where I hope to be in the next few months.  "Moving on" sounds great!

Thanks for your support.  This is so tough!  I am trying to pack and I keep picking up articles of clothing, that I don't think I would wear now or at least until after I have reconstruction.  But reconstruction won't be for at least 6 months and that is thinking positive.  That's if I don't have to have radiation or chemo.  That won't be decided until after results from BMX and SNB.

My thoughts are with all of you, as you work through these difficult decisions.

Cathy

 Minnesota:

She says that it may be normal, but she's just not used to doing this procedure on perimenopausal women (What? Why? Because she's so young? Because they just jump to hysterectomy with women my age?). Anyway, I get to worry now about uterine cancer.

I know I can't help much with the PLCIS issues, but I have had numerous endometrial polyps removed, both before and during tamoxifen.  (I've had umm 4 now.)  All have been benign.  I've been perimenopausal for the first 3, and had the 4th postmenopausally.  My gyn wanted to do endometrial ablation.  I didn't want that because I wouldn't be able to pick up the warning sign of bleeding for endometrial cancer.  I was not offered a hysterectomy.  I guess different gyns do things differently.