Pleomorphic LCIS

KellyMaryland

Mountain,

Thank you so much for your post. I am (slowly but surely) learning to follow my own path and ignore those that give me grief....something I hope my kids will be able to learn early on. When is your Jan surgery?- want to keep you in my thoughts that day. I am officially scheduled for PBM on January 26th. I feel such relief that a date is set- nervous but still sure it's the way to go for me.

Crescent,

How are you? Any new appointments or thoughts about your next course of action?

A happy weekend to you all!

Kelly 

mountainmomof3

KellyMaryland,

I meet with my PS on Dec 20th to decide on the saline to silicone date.  Hoping for the 1st week or so in January.  I will definitely be thinking about you on the 26th of January.  This waiting period is the hardest part, and for me in particular, the week before the surgery was tough.  Are they going to check any lymph nodes?  I'm curious what your doctors are saying to you about plcis.  Do they indicate that you will be "cured" once you have the bmx?  It's odd it takes so many years to develop yet it's supposedly aggressive.  I just wish I understood it better.  I do think we are very lucky to have caught it before it became invasive.  My pathologist told me that they are pretty sure plcis does become invasive pleomorphic eventually.

KellyMaryland

Hi Mountain.

No, they don't plan on checking/taking any nodes. Did you have this done?  A few weeks ago I had a follow-up MRI and though there are funky goings on, the questionable areas haven't changed at all since the last MRI. This is why they've decided that it's not necessary to take the nodes.  The surgeon said if the path comes back with anything but invasive disease, she'd still not go in for nodes.  Only if we get a surprise path of invasive disease would they go back and take the nodes.

As to the PLCIS, there seems not much to say, does there?! It's a weirdly little-studied thing.  They only say that they would be very cautious.  If I don't do surgery, the schedule they set for me is: 2 mammograms and 2 MRIs per year, spaced out every 3 months, plus BS exams twice a year, plus tamoxofen for five years and yearly oncology visits(crazy, crazy, crazy for me stresswise and logistically with the kids)!  Since I've opted for surgery, I've been told that my schedule would be yearly BS visits with MRI if any questionable areas and otherwise MRI every few years.  So though they don't seem to know much about PLCIS, they sure treat it as if it's potentially super aggressive. 

How (if at all) did you prepare for surgery? I've got about six weeks to wait...feels a bit like the last bit of pregnancy...anxious to get things ready but not sure what to expect.

mountainmomof3

Kelly,

I think the reason they checked my lymph node (sentinal node on the affected right breast only) was because I had an MRI before my surgery and they found two more suspicious areas.  This was my sequence of events... started with microcalcifications on my yearly mammo.  I had a stereotactic biopsy which showed lcis, but looked like high grade dcis so they recommended a lumpectomy to remove the lesion and look at this closer.  Well, they did not get clear margins when they did the lumpectomy, so they knew there was something else going on.  I had the mri and they found two more tiny areas near the lumpectomy site.  Their fear was that these were invasive cancers but we wouldn't know till I had the mastectomy (which at that point I had decided to do).  My surgeon decided to do the sentinal node biopsy (where they use a dye to locate the most likely node to be effected first) at the time of the mastectomy so I wouldn't need to come back for a second procedure if my pathology was more than plcis.  It was really just precautionary.  Since the mastectomy will make your pathology definitive (I found this to be very comforting, by the way) if they do find anything else sounds like you'll just go back after the mastectomy and have them check the nodes.  Of course my nodes were clear, and it sounds like your docs think yours are too.  The snb didn't bother me one bit.  It was just slightly more sore on that side initially, but not sore at all now.  My final path after the mastectomy was: "healthy left breast with no atypia but lots of proliferative activity", and the right breast was "extensive plcis"  Bottom line is things had been busy in there for a while.  I noticed my first lump at the age of 31 when my first born was just a year old.  Not cancer but was a "sclerosing adenosis"  Had a second lump removed 6 years later and it was also sclerosing adenosis, so there were signs.  I know I'll never know for sure why I got this, but when I was pregnant with my first child I worked for a newspaper and there were all kinds of chemicals in the air due to the equipment.  I asked my doc about it at the time and he said not to worry, but it was not long after that when I started getting weird lumps.  Who knows.  As far as preparing for the surgery, I was kind of a maniac about keeping myself and my kids healthy (we were entering cold season).  I pulled them out of school so they could be with me for the surgery.  I had to travel 3 hours to a larger city to have it done.  They are 12 (daughter) 10 (son) and 5.5 (son).  My mom and dad and sisters were also there and helped a lot with the kids.  Of course my husband was with me.  I'm not sure it was the right decision to have the kids with me.  I thought it would be better for them because they were older and had lots of questions and I didn't want them to feel excluded or scared.  I think it was too much for my daughter.  She kind of fell apart when she saw me after surgery and it was heartwrenching.  Guess I looked pretty bad, puffy and kind of green (the dye).  We laugh about it now, but it was a painful moment.  I guess my advice would be to stay as healthy as possible and get rest (I had to take a sleeping pill the week before to sleep).  Also, everyone needs different things in terms of support, but for me it was important to just keep my innercircle of friends/family in the loop approaching the surgery.  I just wasn't myself and would cry easily-- kind of fell apart a couple of times, so it was nice to be with people who loved me and understood.  I'm getting weepy just writing this to you and knowing what's ahead for you and your family.  There have been some extraordinary moments throughout all the scary/bad stuff.  I know this will be true for you too.  Feel free to ask me any questions as you approach your surgery day.  

KellyMaryland

Thank you for that. I've yet to tell my kids anything other than "The doctors are just trying to help me get my breast all fixed up."  Haven't said anything about the surgery yet but they are so little (7 year old girl, 5 year old girl, 4 year old boy and almost 2 year old girl) and probably don't need to know too much yet. 

kitkit

Hello gals,

I am in between high-risk MRI/mammo 6-mo check-up after diagnosis and lumpectomy a few months ago for PLCIS.  I take Evista with no real problems except some weight gain that I can live with.

My question:  do any of you have lingering pain in the area of the excision?  Psychologically I know it would be illogical to be able to feel PLCIS coming back or "growing", yet I continue to be aware of the area and feel off and on pain.  Maybe a "1" on  10 point scale.  Perhaps it's just the nerve endings re-generating?  Is there a point at which I shouldn't be feeling any pain in the breast incision area anymore?  Is it ever possible to feel PLCIS" coming back"?

Thanks for your responses,

Kitkit 

KellyMaryland

Hi Kitkat.  Oddly, I have no sensation from the actual excisional biopsy site where the PLCIS was found but I have significant (as in often but not super intense) tingling/pain throughout both breasts.  I also have what the radiologists are assuming are multiple papillomas all over both breasts.  I've been told that these can cause some pain and that might be what I'm feeling, though I think there must also be a psychological component too.  Do your MRIs reveal any funky changes?

Kelly

kitkit

I won't be having the MRI for another 3 months.  It might be totally psychological..the tingling I'm feeling...as though a little army of pleomorphic cells are settling into a cell to begin their dying off (necrosis?) process.  Maybe I just need to visualize something more positive...it's the nerves regenerating over the formerly diseased area and walling the area off from further attack.  How's that?  It seems crazy that I would be able to feel anything happening at all...just have to wait I guess.

K 

mountainmomof3

I think it's more likely the nerves regenerating.  About 2 weeks after my mastectomy I started to get some tingling in both breasts-- honestly, it felt just like worms wiggling around.  It lasted for about 10 days or so and now I don't feel anything in there.  I really think it was the sensation returning to the area.  So did you get clear margins after your lumpectomy for plcis?  I tried a lumpectomy first and they couldn't get clear margins, hence the mastectomy.

cindala

I haven't written in before, but have read this thread for about one year, since my diagnosis.  I have decided to go the PBM  with reconstruction w/TE route for PLCIS on Jan 11 with Drs. Giuliano/Kao at St Johns in Santa Monica.  They will be checking lymphnodes on both sides.  I do not have the BRAC1/2 gene, but lost my sister to BC at 47.  I had excisional surgery in Feb 2010, margins clear for PLCIS but not for LCIS.  I saw Dr. Silvana Martino, breast oncologist at the Angeles Clinic and she totally concurs with my decision.  Apparently some studies have been done in Europe that show PLCIS once invasive very difficult to manage.  I went to St. John's for a second opinion after being treated at another major med center in LA. 

I wanted to put this on the thread so that others would have some more info to help make their decisons, I know reading this thread was very beneficial to me. I will post my path report when I am up to email.  I am 64, no children.

All the very best to everyone in 2011!

KellyMaryland

Cindala, thanks very much for posting. It does help to hear of others dealing with PLCIS.  I'll be thinking of you on the 11th and checking back to see your progress.  Sending you strength and wishes for a quick recovery.  All the best, Kelly

cindala

Kelly, thanks for responding, believe you are scheduled January 26th....thinking only good thoughts for a good surgical outcome and clean pathology.

apatchofblue

Hi there everyone ~ I'm brand new to this whole new world and hope I haven't skipped over a similar question. 

I've had a biopsy to investigate clusters of microcalcs that turned out to be LCIS; a subsequent lumpectomy confirmed, and bxies of 2 other spots in same breast revealed same.  The last bx of 2 spots were read as LCIS Pleomorphic type, which I understand is referred to as PLCIS.  (Btw, does DH mean Dear Husband?)  My breast specialist (I have followup tomorrow am) is recommending bilateral mastectomy; what concerns her most (up to now; I can imagine what she'll say about the pleomorphism!) is that the LCIS extends into the ducts, consistently on all the specimens. 

I don't recall anyone mentioning that in the posts; has anyone had that report as well?

KellyMaryland

Welcome apatchofblue.  Really sorry about your diagnosis but glad you have a breast specialist to take care of you.  I did not have a similar report- just one spot of PLCIS, clear margins. Though I have "numerous nodules" all throughout both breasts, thought to be multiple papillomas but never biopsied.  Have had some other microcalcs biopsied, benign results.  I'm scheduled for a prophylactic bilateral mastectomy on Jan. 26th and I will be sure to share my path results with you.  Maybe if Leaf is reading this she can give some insight? All the best to you and please ask anything, share what you learn, etc. -Kelly

leaf

I only have classic LCIS, not PLCIS.  My pathology report described LCIS with pagetoid spread into the ducts. 

I think that classic LCIS *can* but does not *require* involvement of the ducts.

This paper says one variant of classic LCIS is lobulocentric, among other variants (pg. 2). (Another variant is a ductocentric variant.)   When they describe ductal involvement, they are always using the verb 'can' not 'does'.   http://labmed.ucsf.edu/uploads/207/100_lobular_breast_cancer_current_issues_%202010.pdf.

I think that different pathologists can have different standards for different diagnoses, but I think that ducts do not HAVE to be involved in classic LCIS.

I

Anonymous

patchof blue----I also have LCIS with pagetoid extension into the ducts. I was diagnosed over 7 years ago by suspicious microcalcifications on steroetactic core biopsy, confirmed by wide excisional lumpectomy; I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, and take preventative medications. (took tamoxifen for 5 years and now take evista--tolerated both well with minimal SEs). I also have family history of bc (mom had ILC) which further increases my overall risk. Even with that combination of factors, all my docs (gyn, pcp, onc, bs, rad) felt the BPMs too drastic a measure for the situation. With LCIS, you will get a variety of opinions (there is a lot of controversy over nearly everything about it), but since it is non-invasive, you do have the time to research/talk to others/ get 2nd opinions/ etc.... Don't let anyone rush you into anything. You are the one who ultimately has to be comfortable with the decision you make. Feel free to PM me if you like.

Anne

KellyMaryland

Cindala,  the best of luck next week for your surgery.  I'll be sending positive thoughts your way.

-Kelly

cindala

Kelly,  Thanks for the good thoughts,  the wait is almost over.  Will advise path report.  Best good wishes on the 26th.

Cindala

Crescent5

I'm sorry I haven't posted in a while. I needed a mental break from this stuff. I've since met with an oncologist and a plastic surgeon. I have some intense thinking to do. It was very nice to not think about it for a little while.

Best of luck to the ladies scheduled for surgery this month. I hope your recovery is quick & stress free.

Welcome to the new members. I'm sorry you're in this club.

I know everyone says we have time to decide, but how much time? If I go for the surgery, I do not want it this summer. But spring seems so soon. Is fall too long to wait?

Tingling and shooting pains. I forgot who asked about that, but yes, they still come and go 2 months after ex. biopsy, but it's not constant. I don't imagine these cells grow terribly fast if they are in situ. They're so tiny, I don't think you could feel them grow. I think it's natural to worry though.

Best of luck to everyone. Please keep us posted on your progress.

leaf

Of course you're worried.

Assuming you had a surgical excision (to help determine that there isn't 'something worse' going on in the area), at least for classic LCIS, most estimates I've seen say the incidence of 'something worse' is *roughly* 0.5-1% per year.  I assume that PLCIS was included in this group, since it is a relatively new diagnosis.  http://www.ncbi.nlm.nih.gov/pubmed/?term=16110014  This is a rough number, of course.

I've certainly seen posts from members who say their doc insisted they wait at least 6 months after their decision to have a PBM to make sure that's what they want.

Holding out my hand to you.

Minnesota

Hi all,

I haven't been on this thread for months, so have just caught up with everyone--those of you I've conversed with before and those of you who are new. Mountainmom, as you wrote of your tears, my eyes filled up, too. I'm so sorry that so many of us have had to deal with bc - and especially this unknown pleomorphic type.

 I feel bad for not checking back here, as others have done so diligently - like Leaf, Cornellalum, Formykids, awb, and others. Reading this brings me back to all the indecision and fear and weighing of odds and hearing differing opinions from docs that do and do not know about PLCIS. It was hell, for sure.

To Kelly, Cindala, Crescent, Apatchofblue and the rest of you wrestling with this issue - you will come through this! You are all very intelligent and thoughtful women who are doing all the right things - informing yourselves as best you can and despite how difficult it is to find anything about PLCIS, as well as talking to others who are or have been on a similar path. I don't know how I would have handled all this without the wonderful ladies on this thread for support.

Crescent - Yes, take a mental break from this stuff once in a while. I have taken one now for many months! And it was the best kind because it followed my finally making my decision and acting on it. Really, it is this indecision that is the worst part of all of it.

 I also liked what one of you wrote about your brain needing time to catch up with what your body was telling you. You do have time. If you decide to go the surveillance route, you certainly can do that and then revisit your decision later, if it's not feeling right to you. It took me a while to realize what decision was right for me. But now that it's past,  I have no regrets, and all of this seems like a bad nightmare I had ages ago. I hope that all of you can come to a decision that brings you peace.

Cindalla - I hope your surgery went well and you are recovering nicely.

Kelly - I hope you have found some peace with your decision, and best of luck next week.

mountainmomof3

Good luck to everyone having surgery.  KellyMaryland, I'll be thinking about you next week.   The week before the mastectomy was the hardest part for me.  I have my exchange surgery this Friday, the 21st... will let you all know how that goes.  

cindala

Hi Ladies,

One week post surgery BMX w TE and path report showed 4cm of LCIS RB not taken on excisional surgery 2/10.  That is it, otherwise clear.  Needless to say it is a hugh relief.   My recovery has been going ok, 4 days in hospital with a few minor issues,  hope to get drains out Friday. 

Anyone wanting to PM me please feel free to do so.  I was treated at St. Johns in Santa Monica, CA by Dr. Giuliano,  head of the Petersen Breast Center, John Wayne Cancer Center,considered by many to be among the best.  He didn't want to make my decision for me (went to him for second opinion) but after I said I wanted to proceed with BMX stated with my family history, etc. the possibility of this going invasive were 50%.  He says PLCIS is a very rare condition that they just don't know enough about.  This is the Dr. that developed the sentinel node procedure. I went to Dr. Silvana Martino at the Angeles Clinic (breast onocology and research center).  She completely agreed with my decision, along with Dr. Chung who came to the Angeles Clinic from City of Hope.

My OB/GYN told me from day one to have BMX with TE, just took me a year to get there.

Much love to all,

Cindala

KellyMaryland

Cindala- Welcome home. Thanks so much for posting- I've been thinking about you. Good wishes for continued healing. -Kelly

apatchofblue

Hi Everyone ~

First of all, Cindala: I'm so glad all went well and that you're home.  I'll send healing energy your way!

Kelly, I'll be thinking of you next week.  I imagine this week must be a tough one.  We're all with you in spirit. 

Thank you all for reading my first post and responding;  it took me a couple weeks to come back to it.

I totally relate to needing a mental break from all this; I think it's a good thing to do sometimes. One thing I have to be careful of, though, is avoiding dealing with difficult things.

I wonder, Cindala and Kelly: how did you come to your decision to have a mastectomy?  It's really hard to imagine what life would be like after.

The pleomorphic aspect of my dx makes it seem like something's got to be done.  My current BS (breast surgeon?) and I seem to agree that this situation has gone past tamoxifen.  Right now I'm working towards a 2nd opinion.  I've started wondering, though, whether it might be better to consult with an oncologist rather than a surgeon.  Mine even said (in so many words) that she's a surgeon, so she attacks a problem from a surgical perspective.  Did any of you get a 2nd opinion from an oncologist rather than a surgeon?

Thanks everyone, and may we all come to appreciate the good things that are to be found in this really difficult situation that we're all in!

KellyMaryland

Minnesota- thanks for your post and your good wishes. Really appreciate it.

patchofblue- I had multiple "2nd" opinions with both oncologists and breast surgeons.  I was never pointed in a particular direction- all always laid out the options (monitoring with tamoxofen or PBM).  What helped me the most, however, was meeting with a medical social worker. I had already made my decision when they stepped me up to an every three month imaging schedule- definitely too much for me.

Crescent5

Cindala, I hope your healing goes smoothly. It must feel good to have the big part behind you.

Kelly, your surgery is next week? I will keep you in my thoughts.

 Apatch, sorry that you're in this phase. It's a rough one for sure. I got a 2nd opinion from an oncologist who said I could take Tamox. which I'm not going to take. Neither BS nor Onc were freaked out with the P though they did say not much is known about it. The Onc said survival rates for all three options (close monitoring, Meds, PBM) were the same. It's really just a matter of what you're willing to deal with. Both insisted that I have time to make my choice.

Since finding out I qualify for nipple and skin sparing mast with immediate reconstruction, I've been leaning toward that. I met with a PS last week, and I'm not at all happy with the incisions he'll have to make. Nor am I thrilled with facing another surgery so soon. I feel like I just got my life back after a long diagnosis process, and I'm not too eager to start all over again dreading a surgery date and recovery period. But if I put it off too long, I may find myself in a position that I don't have much choice. But mastectomy is not reversible, so I need to be sure.

beacon800

Cindala - congrats on the good path report - such great news!  I think you did the right thing - I did the same thing - and it is interesting how doctors have different opinions, etc.  Sometimes I think they are constrained by legal issues and don't want to push too hard on surgery options.  I had them all over the place on opinions.  I was super happy with the outcome and very thankful.  Good healing to you and God bless.

Minnesota

I think the docs are definitely worried about liability issues. Also, I feel they may lean too far the other way in always trying to preserve the breast. Admittedly, mastectomies are/were not always necessary or any better than lumpectomy with radiation. But sometimes mastectomy can have a better esthetic, as well as medical outcome than lumpectomy, depending upon how extensive it has to be. In this case, they have zero info on different treatment outcomes for PLCIS, so are more afraid of recommending an overly aggressive stance than not aggressive enough. I'm suspect of any doctor saying all treatment options have equal outcomes for PLCIS, since no one knows that yet.

Apatchofblue - I agree with you that mastectomy is a scary thing to think of, but if you can have immediate skin-sparing recon, even nipple-sparing, like Crescent is looking at, you are having so much more control of your situation and your outcome can be very, very beautiful. I honestly do not feel as tho I had 2 mastectomies (done 4 years apart) because these breasts are me. Except for some scars (which fade a LOT), no one would know I had the surgery, even without my clothes. Really, It feels weird to fill  out medical forms and say I had mastectomies.

Crescent - I hear you about thinking of facing more surgeries. It is a long process. I went thru it once, and then after finally reading my pathology report and finding out for the first time that I had PLCIS, I ended up going thru it all over again for the other breast. So DIEP flap AND GAP flap! But now I'm done and ready to get on with my life!

Kelly - You're totally welcome! I also got multiple opinions from both oncologists and a breast surgeon.

apatchofblue

Hi Everyone, and thanks for responding. 

 Congratulations to Cindala -- hope the healing is still going well.

Thanks to Minnesota for the perspective s  on various issues!

Kelly, are you getting ready for your surgery?

Crescent, did you already have one M?  I know what you mean about it being irreversible -- it's a huge decision, daunting really.  While the aesthetics are def. something to consider, it's more the sensation (or loss of, really) that concerns me.  On the other hand, the risk of not doing surgery (or anything other than watching) is daunting, as well.

I'm heartened to hear that others have had multiple 2nd opinions, and that was good info about seeing a medical soc. worker. 

Someone posted a good article (from MDAnderson?) about PLCIS; does anyone have other good ones?  Much of what I've been able to find are super-scientific and I haven't deciphered what findings are really saying... Maybe they're saying they don't know!

Take care, all!