Pleomorphic LCIS

Yes, agree with mack and awb, maybe your facility will be willing to fax it to your GP?  We all want to be ready for whatever is ahead on our path.  That's been going on for many thousands of years.  Best wishes for a speedy, but thorough path report.  We are here for you.

Don't know if any of you have read this, but it comes out of  M.D. Anderson this year.

http://nurse-practitioners.advanceweb.com/Article/Clear-and-Present-Danger.aspx

Thanks a lot, Linda. It seems we are getting a bit more clarity about PLCIS. Helps with our decisions.

it  could be either the PLCIS or the LCIS;  LCIS is not always "seen" on mammo/US/MRI, but it can be  detected pathologically in the tissue samples that they remove and review microscopically.

Anne

I was told I had ALH on a stereotactic biopsy in August, and LCIS on an excisional biopsy in Sept. The oncologist advised me to go on tamoxifen. In April,I have a second opinion at Sloan Kettering's Breast Surveillance Center for high risk women. You mentioned something about their policy on tamoxifen. I assumed they would also suggest tamoxifen since that is what it seems like everyone does in this situation. I don't really want to take it, but I am a worrier. I am 51 with no family history of bc. What do you know about Sloan? Thank you for your help.

Thank you for the info, Minnesota. Hearing about your outcome with tamoxifen is what makes me not want to even consider taking it. The local oncologist seemed shocked when I said I wanted to think about it.

Hi All

Back from my latest trip (again) and  the results are in and I regret to say that it is just going from bad to worse. I really don't know how much more of this I can handle!  I was trying to be optimistic and think that she was able to get clear margins and nothing else would be found.  I was wrong.

First the doctor said that she was not able in her attempt to get clear margins on the PLCIS.  She said the PLCIS was extensive throughout the sample. There is not clear margins on the outside and the bottom of the breast. She also kept referring to the PLCIS as though it were DCIS, as she said there is not enough information about PLCIS.  She also mentioned that my case was taken to the tumour board and that is how they decided it should be dealt with (like DCIS)

Secondly, she said found within the PLCIS, there were two areas of Invasive Lobular Carcinoma. One of them measured 5mm and one measured 1mm.

She said more surgery is required as well the nodes need to be checked.  Although she did say another lumpectomy could be done to try to get clear margins, she seemed to be leaning more towards unilateral mastectomy.  Depending on if there is anything found in the nodes, that would determine the next step. When I asked about doing bilateral, she still seems to think unilateral would be all that is required at this point, of course unless I wanted it. She also said that immediate reconstruction may not be an option, depending on what the result is of the sentinel node biopsy.  If radiation were to be required, this would not give the best result on reconstruction. When I asked how quickly I should do the next step, she said that technically it (the invasive) is out, so it should be dealt with, and that 1-2 months would be reasonable. She could do either lumpectomy or mastectomy in January, but if I wanted reconstruction that would take longer to coordinate.  It would likely be a couple of months to be able to coordinate both surgeons schedules.  That just seems to long to me.  What if they find that it has gone into the nodes? I wonder how quickly other women that are diagnosed with ILC have their surgeries? Do they have reconstruction at the same time? What do I tell my kids?  So far I have told them I have breast cancer, but I also told them the doctor would be taking it out with the surgery.  It just seems like this is never ending. I am so scared and I don't want to scare them anymore.  I guess I will have to move over to the ILC thread and ask alot of these questions.  But I probably will hang around here as well, due to having the PLCIS as well.  I don't even know where I belong anymore.

Cathy

Thanks for the link, Minnesota!  I really learned from lurking!

Best wishes, Cathy.  We all are reaching out a hand to you.

Hi everyone ... I just came upon this thread..hadn't seen it before.  Very interesting reading this.  I was diagnosed after I had breast reduction surgery with Invasive lobular cancer.  Because they really couln't pinpoint exactly where the tissue came from I had a bilateral mas.  I feel fortunate to have had this because they did find tissue in the other breast that was most likely going to become cancer at some point.  I also had recon. surgery and will have the final implant put in on Jan 12th. I went through chemo and am now doing zometa and arimidex.  The SE  from zometa were horrible but I think will only last for a couple of days.  So far arimidex is going ok.

I was told that I was "lucky" to have found this during a reduction sugery because it may not have shown up for a long time on a mamo.  which I had 1 month before my reduction surgery and nothing did show up on.  Now is it true that some doctors do not consider ILC cancer? Can anyone shed some light on this?

Thanks

Balsie~

P.S. Minnesota...what part of MN are you from....I live in northern MN

Hi

Unfortunately in my course of dealing with this for the last 9months I have climbed the "lobular ladder"

March I was diagnosed with ALH (stereotactic biopsy),was told not breast cancer but put me at higher risk.

June(incisional biopsy) diagnosed with classic LCIS, was told not breast cancer but put me at higher risk.

July and October had a BIRAD 5 MRI. October (MRI guided biopsy) diagnosed with PLCIS and was told this is breast cancer and must be treated like DCIS. The area of PLCIS has to come out and it has to come out with clean margins. Did not get clean margins.  

November (excisonal biopsy) diagnosed with 2 areas of PILC.

So now I will be having bilateral mastectomy Jan 12, where they will be doing a sentinel node biopsy to see if it has gone to the nodes what and if further treatment will be required. In my case the classic LCIS was a red flag that there was more going on and most ILC is not detected until it is much larger. So they tell me I should consider myself lucky that it was found.  Funny I don't feel very lucky right now!

I dont' want to scare anybody, but to share my story and how things have progressed.  LCIS needs to be taken more seriously.  I had too many doctors that just brushed it off, I think they are thinking about it differently now. Obviously I am biased.

Cathy

Cathy -

I am thinking of you. For what it's worth, I think you are doing the right thing.

I am still talking with my doctor about my PLCIS.  I had originally scheduled a re-excision on the 11th to try to get clear margins, but I have cancelled it. I am probably headed for a mastectomy as well.  I am also waiting for a second (third? fourth?) opinion from a doctor from Sloan-Kettering.  All my pathology slides, plus the MRIs and mammograms were re-read at Brigham and Women's in Boston, and then the information was sent to this doctor, since he apparently has some experience with PLCIS.  I believe that Omaha Girl's doctor is also from Sloan-Kettering.

Omaha Girl's link was yet another piece of information showing that PLCIS is potentially nasty stuff. I am going to get another appointment to see my BS (I forwarded him the link from Omaha Girl).  One way or another, we are going to start getting these doctors to start learning about PLCIS, and addressing it. And in the meantime, we need to make the right decisions for our health, and our lives.

Chris

Wow! Great link and summary of the studies. I especially liked the smoking gun graphic next to one of the slides on PLCIS...

Balsie,

Sorry, I didn't see your question last time. I'm from St. Cloud. We get up north alot. Especially along The Shore! Where in the northern part of the state are you?

Eve

Well here I go again....had MRI last Thursday, today the Dr. called and she said there is another "area of concern" in my left breast. Scheduling an MRI biopsy as I type. I am so disgusted, I don't know what to do with myself.

Thanks, I appreciate it, and I laughed out loud when I visulized the alien!

I having the biopsy a week from today, and this will be #5 since June!