Pleomorphic LCIS diagnosis...question

KitKit

I was Dx with PLCIS after they found calcifications on my mamo and yes it is very rare. I first had the stereostatic biposy (PLCIS) and then additional US's, MRI's, mamo's and another 3 biopsies to rule out other suspicious areas. I had a lumpectomy and did not get clean edges,  I had another one and still no clean edges. I saw two oncologists one with UCLA and another who specialized in DCIS/PLCIS. Both recommended mastectomy since the area in question was very extensive in the affected breast.  I decided on a bilateral mastectomy with diep reconstruction and I am very happy with my results. As it turns out PLCIS tends to be mutifocal and my pathology reports indicated another area of PLCIS that had not been detected so it was the right  decision for me.

They like to do an excision to see if they can get clean edges and to see if anything else is going on. From my understanding depending on the size of the affected area a lumpectomy, close monitoring and medication ( tamoxifin) may work if they can get clean margins otherwise they recommend  additional excision or mastectomy to get clean margins.

Hope this helps. Feel free to PM me if you want to talk I would be happy to give you my number since I am in the LA area as well.

kitkit, I had a lumpectomy for invasive pleomorphic ILC, but left extensive PLCIS in my breast. The original recommendation from the docs and tumor board was to do bilat mast b/c of the extensive PLCIS, then they reversed themselves, saying I was more at risk for mets from the PILC than local recurrence from the PLCIS. So my situation doesn't completely correlate with yours, but I did want to mention that my PLCIS has been stable for 2 1/2 years now.

I am 1/2 Ashkenazi Jew, and my father, who was full Ashkenazi Jew, died of pancreatic cancer, which is usually BRCA2. My mother (not Jewish) died of breast cancer, and since I was diagnosed at a young age (38), on paper I looked BRCA+. My testing came back negative; however, I was told I probably have a BRCA mutation that hasn't been discovered yet and that I will need to be retested as new discoveries are made.

Good luck with your decision making. I think the measured approach you are taking is a wise one. The bilat mast option is always there if you decide to go that route, but you can't put your boobs back on.

Hi kitkit

I have recently had a very similiar situation to what you describe, and understand how difficult it is to hear this news and then try to make a wise decision. I had a diagnosis of PLCIS after mri guided biopsy.  I had to make a decision to have lumpectomy and try to get  clear margins or mastectomy.  At that point I thought I would do the lumpectomy and at least try, with the thinking that you could always take more if necessary, but you cannot undo a mastectomy.  When they did the surgery  they found two areas of pleomorphic invasive lobular carcinoma, and still did not have clean margins.  So again I was faced with a decision of trying to get the clean margins by lumpectomy or mastectomy.  I chose the bilateral mastectomy, and part of the reason was it seems as though the invasive lobular cancers do not show up well on mammogram or ultra sound. My suspicious area was only seen on MRI. 

This is a very difficult and personal decision and everyone has to do what is right for them.  I am now waiting for the results of Oncotype test to see if I should be having chemo or not. Feel free to PM me if you would like.  I will be thinking of you.

Take care

Cathy

Kitkit - PLCIS is such a rare diagnosis, and there is no clinical research to help us in finding our way to a logical treatment path.  So each of us has been left to muddle through our own individual circumstances, and try to find a solution that works for us.  There are a few things that we know: 

1. PLCIS is molecularly similar to ILC, and particularly to pleomorphic ILC.

2. PLCIS is often found in concert with ILC, and particularly with pleomorphic ILC.

3. There is no concrete evidence that PLCIS progresses to either ILC or PILC.

4.  PLCIS, like LCIS, is often multifocal and multicentric (it is found throughout the breast, and often in the other breast).

5. Numerous studies have hypothesized that PLCIS might be more aggressive than classic LCIS, however, there is no concrete evidence of this.

6. There is no current evidence that either radiation or chemotherapy treatments have any effect on PLCIS.

We also know that ILC is difficult to detect on standard screening tools.

So, with all that, where are we? Well, there are some individual circumstances, such as family history, and known genetic mutations, that have some bearing.  Since you are being tested for BRCA, you will have that answer soon.

There is also the question of how comfortable you are with getting close screening for the foreseeable future.  As you can see from some of the answers you have gotten here, there are a few of us who have gone that way, and are very comfortable with it.  Some of us have gotten bilateral mastectomies.

I had a lumpectomy first (mainly because  I had also gotten an incorrect diagnosis of DCIS, but it wasn't changed to PLCIS until after the surgery).  I did not get clean margins on the PLCIS.  I also have a strong family history of breast cancer.  And I had abnormal results on both a mammogram and MRI on the other side.  My bs recommended a re-excision to try to get clean margins. I opted for a bilateral mastectomy, which I had two weeks ago.  The pathology from that was more PLCIS and classic LCIS on the first side, ALH on the other side, and some other abnormalities on both sides.

I decided to have bilateral mastectomies because the best that I had to look forward to, if they got clean margins on the re-excision, was tamoxifen, and screening every six months for either the rest of my life, or until the cancer came back.  Being only 48, I could not imagine spending the next 40-50 years getting mammograms, MRIs and ultrasounds, and waiting for cancer to show up.  I also had a much more increased risk because of my family history.

But that was me, and I had individual circumstances that no one else had.  So you need to get all the information about your individual case (like was your PLCIS er/pr positive? do you have benign calcifications anywhere else? get your BRCA screening results) and then take the time you need to think about this.  There is really no rush (I was initially diagnosed 8 months ago) so really TAKE YOUR TIME.  And get a second opinion.  And a third if you need it.  (I got three).

I know this is a long post, and hope you don't mind.  It's just that I just went through all of the same questions that you now have, and if any of my experiences can help you, I would like to share.  PM me if you have any questions.

Macksix - I was going to respond just as you did re: the comment that you can't put the boobs back on! We know some surgeons who can definitely put them back on! LOL!

But seriously, all of us ladies here are in an extremely frustrating and scary situation because so little is known about this rare cancer Our docs all tell us they've never seen this before and our pathologists look at the slides and scratch their heads and, hopefully, send it to someone else for another read. I hate to think of the gals whose pathologists just decide to call it on their own - and may decide it's invasive cancer (as mine first thought) and then they go ahead and have chemo unnecessarily. We're at least lucky that the correct diagnosis was finally made.

After lots of research, consults, and soul-searching, I've decided on PM on the other side (I had mast on the pleo side 4 years ago because it took up my whole breast, which is small - and also, they thought it was invasive, at the time. Plus this thing is generally treated like DCIS in that they want clear margins). Everyone has to come to their own conclusion about how they want to handle this thing. Sometimes I thought that just the fact that this is a very rare form of breast cancer about which they know little or nothing could be rationale enough for anyone to try to get all of it out, including anything that might be lurking and so difficult to detect on the other side, since this thing might be bilateral, like plain old LCIS.

One thing that finally nailed it for me was that I could no longer take tamoxifen or raloxifene because it was causing me many gynecological problems that were leading the docs to recommend that I have my ovaries and uterus out. Or, I could stop the drugs. So I got to weigh one part of my body against the other, and decided I'd rather keep the ovaries and the protection they may provide me against other health problems that run in my family - like heart disease, osteoporosis, and Alzheimer's. So without these other drugs to provide me some possible protection against cancer in the "healthy" breast, the risk just seemed too much for me, personally.

But as has been said before, everyone's situation is different. I would not have been ready for this decision 4 years ago, but now I am. Good luck to all of you struggling with these difficult issues!

Hi Karen

I don't have the same situation that you have, but just wanted to let you know how much I think this just really sucks.

As we go through this, we continually have to make these decisions on what to do with very little information to help us decide. I hope you can make a decision that you are comfortable with and then move forward.

Take care

Cathy

KellyMaryland -

It sounds like you are taking the right first steps.  I would find out if your breast surgeon has any experience with PLCIS (or if he/she has ever had a patient with this diagnosis before - you would be surprised how many have not).  I would also recommend finding out if your hospital has a tumor board, which is a periodic conference with various cancer specialty doctors where they talk about difficult or unusual cases.  If they do, I would request that your case be reviewed by them, and get a consensus recommendation.  A second, and even third, opinion, might also be helpful, especially if you can find a doctor with PLCIS experience.

In the meantime, try not to panic.  It is not invasive. You are not fighting the clock. You have time to get all the information you need, and make a careful, considered decision.  Don't panic.  If ever there was a time to have a cool head, this is it.  Breathe.

There are a few other PLCIS threads on this LCIS forum that may be helpful for you to read, if you haven't already.  We are here to help you, and listen to you.  Let us know how you are doing.

Thanks very much for taking the time to reply. I have an MRI appt. set for next week and a follow up breast surgeon appt. set for the following week- so at least I feel some sense of forward motion. Thank you again.

Kelly

kitkit----I remember my surgeon saying he got clear margins, but then that clear margins "really didn't matter" with LCIS; since it is thought  that LCIS is a bilateral disease, generally multicentric and multifocal. So if it is found in one area, it is most likely throughout both breasts. (so in order to remove it all, you would have to have bilat masts). But since it is non-invasive, you don't have to "remove it all"; the standard options are close monitoring, tamoxifen and close monitoring, or BPMs. I took tamox for 5 years, now take evista, and continue with my mammos alternating with MRIs every 6 months--more biopsies and lumpectomies are not necessarily a "given" as some have said---I haven't had to have any more since my original biopsy almost 7 years ago. But is is a very personal choice, one which we each have to make for ourselves.

Anne

I would imagine that part of the reason for getting a new mammo 3 months post-lumpectomy would be to establish a new baseline.  And since everything would be changed post-lumpectomy, if they did miss something, they could look for obvious changes.

I had 2 biopsies 1 year post-lumpectomy (lumpectomy 1-06) , and haven't had any biopsies since.  I'm finishing my 5th year of tamoxifen.  As Anne said, more biopsies and lumpectomies are not necessarily a 'given'. (I have classic LCIS, ALH, and DH - not ADH.)

Minnesota,

I am interested in what they found in your prophylactic surgery?

Misty

MistyJ -

By the way, they found ALH in my right "prophylactic" breast, among other things. So not everything was rosy for me either.

Many places have 'tumor boards' so to get a variety of opinions from other doctors.  I think its very helpful to get different people's viewpoints, at least from people you respect.

I know they know little about pleomorphic LCIS.  I wonder how analogous it is to DCIS.  For the ducts, they know that they may intertwine and branch, but they (almost never)  intersect.   It sounds like in some cases of DCIS, you can get 'spotty' patches of DCIS in the same duct.  Its hard to know because the ducts can intertwine so much about each other. They know this by looking at mastectomy specimens, and tediously putting parafin (or a similar substance) in the ducts.  As far as I know, they don't know this about the lobules though.  I wonder if potential intersection (or whatever) of lobules could have some bearing on the 'clean margins' issue.