Pleomorphic ILC

Gitane: I've just finished reading all of the posts on this thread. Knowing that PILC is about 1% of bc patients, do you know what percentage of that small group are HER2+ve? I freaked out when I read some of those old articles especially the one that said PILC had 4 times more chance of recurrence.

I have been able to understand from my onc that being HER2 wipes out everything else. I guess I can be grateful that we have herceptin and I do have high hormone receptors which is good too, but it's depressing to be in such a minority.

Sue

Hello fellow Pleomorphs,

Just a quick hello after my regular 6 month onc visit. Everything looks ok, and it's another visit down! I didn't have tumor marker levels drawn-not sure why he didn't do them this time. I asked about the relevance of pleomorphic cells to risk, and he said it's only part of the picture. All factors, such as nodes, her2 status, and hormone receptor status combine to provide information as to risk of spreading, and pleomorphic cells aren't the predominant risk factor.

Believe it or not I have never looked at my path report. Today I found out that the cells were grade 2, and that the tumor was such a large size(3-5 cm) because it was spread out, and not in a lump-he said it's not really comparable to an IDC lump of 3-5 cm.

Off to the gym!

Have a happy day everyone,

Catherine

Hi cathmg that is interesting and good news? It sounds like your oncologist is indicating the pleomorphic is just part of the picture,not all doom and gloom and only part of the risk factor.

I will be getting my pathology results for bilateral/SNB on Monday and find myself getting very nervous. I am wondering how many of the pleomorphic ladies have had to have chemo?  Is this pretty much a given?  I have a feeling my surgical oncologist may think it is not necessary (she has indicated this already) whereas my medical oncologist may recommend it.  I don't see him until next Thursday though.

Cathy

Hi Cathy,

I hope you're not too stressed waiting for your results and treatment decisions-it will be easier for you when you know.  As for chemo, I did have 4 cycles of Taxotere and Cytoxan because of the size (3-5 cm) and my age, 43 at the time. My onc said it was my choice, but that I would probably come back in the grey area if I had the Oncotype test done. He then said, "if you were my wife, then I'd want you to do chemo." So, I decided in a most unscientific fashion to do chemo! I have a feeling that given you small tumor size and neg nodes you may have an easier decision to make.

All the best Monday,

Catherine

Hi

Thanks for your encouragement.  So I do now have some more pieces of the puzzle.

The results of the SNB were negative, thank goodness!!!!!!  The right breast that had PILC and PLCIS, did not have any more invasive, but did come back with more PLCIS. The left breast had fibrocystic changes.  My surgical oncologist did not believe it would be necessary for me to have chemo or rads, but said that will be the decision for medical oncologist.  I will see him on Thursday.  I am 46 and the two areas of PILC were both less than 1cm, so I wonder?

Thanks Cathy

Catherine: Mine was found on my regular biannual mammogram. Stood out quite clearly. Talk about being lucky.

I just came from meeting a new female breast surgeon (I hated the guy I had). I was worried about the extensive LCIS found. She allayed my fears as LCIS is not the same as DCIS but if it had been pleomorphic then more surgery would be on the cards. She also said I can have an MRI in October after all the treatment has finished. I am worried about the other breast, but I guess it can wait - too much going on right now.

Sue

I met with the medical oncologist and he would like me to enroll in the TailorX clinical trial.  He explained that although the 2 invasive components that they had found in previous surgery was small, sometimes a small tumor can be agressive.  Everybody's breast cancer is so different and this is one way to analyse mine specifically. It will take approx. 3 weeks to get the results, as the tumor is sent from Toronto to my home city, and then it is sent to California.  That is one trip I would have like to go on!          

It has got to be warmer than Canada. That must be one huge lab in California if all of these tests are going there.

   How difficult it will be if it ends up in the grey area, and you are randomized, to either chemo and hormone therapy or hormone therapy alone. Basically by flip of a coin.  OMG, how do you do something so serious as chemo by flip of a coin?  Hopefully it comes back under 11!!!!!  From what I understand, Canadians can either pay for the test on their own and not go into the trial, but would cost approx. $3,600.00.

I asked my oncologist how many other women they have in my city with PLCIS or PILC and he said I was the first.  Although he said since me, they have diagnosed a couple of other women with PLCIS, so it would appear as though the word is out, and this will be seen more often.  What he did say though when I asked about how concerned I should be about the pleomorphic invasive lobular component to this. He said they are not as concerned about that, as they are when they see PLCIS, because, that they believe tends to be a stronger indicator that it is going to develop into invasive. Stronger indicator than LCIS or DCIS. So in my case the theory was in fact correct, because they did find the two areas of invasive.

I am wondering how many other PILC ladies have had oncotype test done?

Cathy

That is very interesting.  I noticed in your profile you were SNB negative as well.  Did your oncologist mention if doing the chemo had anything to do with the pleomorphic of this?  My PILC was smaller, less than 1 CM, but my age is 47.  So not as young as you are, but I think still on the younger side for this diagnosis?

Hi Cathy,

I'll chime in here.  I am also a PILC/PLCIS gal, and I am currently enrolled in the TAILORx trial.  I was diagnosed in May, had surgery (BMX) in July, and met my onc for the first time in Aug.  The onc was the first to mention the pleomorphic aspect of my pathology.  Up to that point I was just told that it was stage 1 and that I would probably not need chemo.  My onc asked me to enroll in the study for just the reasons you described.  She felt that it would be a benefit to me.  She also told me that if I disagreed with the random decision, I could opt out.  I don't know if that is how it would work in Canada.  I had 2 areas of invasive PILC in my left breast, along with extensive PLCIS in both breasts.  I met with a radiation oncologist, (though I did not end up needing rads), who told me that she was very glad that I had opted for BMX because she really felt that the PLCIS would have ended up as invasive sooner rather than later.  My medical onc told me that the pleomorphic aspect was an indicator of a more aggressive cancer.  It took about 3 weeks to get my test results, and my oncotype was a 24.  I was randomized to chemo, and was thankful since I was so close to the cut off.  I would have been worried had I been randomized to hormone therapy alone.  My onc also indicated that she would have pushed for chemo in spite of the study.  I had T/Cx4 and now I am on Tamoxifen for 5 years.  That is my story, I hope it helps.  If you have any questions I would be happy to answer them if I can.  My thoughts are with you as you wait for your results.  I hope all goes well for you, and you get a nice low number!!!!!!!

Best,

Susan

Hi Cathy,

You are so right, it is good to have a place to talk with people with a similar diagnosis.  I haven't met anyone else with PILC/PLCIS either.  We are few and far between I think.  The good news is, as Nash pointed out, even though not a lot is known about PILC, it isn't any more aggressive than a grade 3 IDC.  I know that we all worry about what it all means, but treatments do seem to work for us.

I had one tumor that was 1.5 cm and one that was just under .5cm.  One of the oncologists told me that I was just under being considered stage 2.  I know that the oncologists here really utilize the oncotype test to make recommendations.  I think they like it because it is a fairly scientific tool, and it allows them to look at a variety of genetic factors aside from just size and grade.  My sister in law is a family practice doc, and she really encouraged me to have the oncotype, because she feels that it is a solid test.  She also was very glad that I did the chemo.  While it is hard for anyone to be in the gray area, it does give you a place to start as you weigh your options.  I hope you get a low score!!!!!!

The choice to have immediate reconstruction is by far the thing I have second guessed the most.  If I had been aware of the pleomorphic nature of things I might have waited.  My medical oncologist, who I didn't meet until after the reconstruction was already done, isn't thrilled that I had it done.  I feel like I made that decision blind, I had no idea what would come next and I was not in the best emotional space to deal with it.  The results are about as good as I can imagine, I really don't look as if I had such major surgery, and my breasts look very natural.  The down side is I still have a lot of skin and breast tissue left and who knows what is lurking there.  I have an area of fat necrosis in the breast that had the PILC, and when I found that lump I freaked out.  It feels just like the tumor did.  It had to be biopsied, and waiting for those results was every bit as bad as waiting for the initial diagnosis.  I hope that I won't have more scares like that, but I also know that it is a possibility.  I don't think you will regret taking it slower with reconstruction.  I am sure that if you choose to do it you will get great results.

You are in my thoughts, please let us know when you find out the results.

Hugs,

Susan

Hi Marianne

Interesting that we share PILC diagnosis as well as January mastectomy.  ILC does seem like the sneaky one, hiding from so many different types of diagnostics.

Good luck with you surgeon tomorrow, and hopefully there is no new surprises from the mastectomy.  When I asked my surgeon about the Oncotype test, she didn't think I needed to have it done, nor would I need chemo.  I think that is where the medical onc comes in to play.  My medical onc wanted me to have the Oncotype test done, so now it is the wait to get the results.  I am quite nervous and anxious.

Cathy

Sue/Gitane: My oncologist told me that being hormone receptive was good because of the drugs to target it. I had extensive LCIS as well and the article on this site about LCIS said that even that will respond to AI's etc. My receptors were both really high - 90 and 95%. But I have the added problem of the HER2 status - you think you're rare. The good news is that HER2 pleomorphic lobulars seem to respond well to herceptin, so that's something.

Sue, your tumour sure has shrunk - isn't it great to see such a response - you really know the chemo works!!!! Good luck with your surgery.

Sue