Pleomorphic LCIS

Hello everyone.  I've quietly been reading your forum since my diagnosis of PLCIS a few months ago.  I began having biopsies and surgeries 20 years ago, at age 39.  I've had a benign Fibroadenoma, benign fibrocystic breast disease cysts removed and a benign ducal papilloma removed.  Last fall, a sterotactic biopsy path result revealed a DCIS tumor.  Had a lumpectomy, didn't get clearn margins.  Path came back all PLCIS.  (MRI had shown enhancement in both breasts.)  Will see oncologist tomorrow but don't know if he'll prescribe one of the hormone therapies since I have a small area of scar tissue on the brain, which would indicate I've had a stroke, and have had a TIA.  My surgeon thinks this is the best treatment for now, along with close follow up with mammography and MRI.  In his 25 years or surgery, he's only seen 1 other possible case of PLCIS.  No one on the clinical team had experience with it.  They called Stanford and Mayo but got no info from them.  Surgeon said general concensus at this time is to treat like DCIS.  Not recommending further surgery or radiation.  My thimbleful of knowledge based on the little research I could get through and reading your posts tells me I need to be vigilant and ask questions.  Problem is that I have more questions than I can make sense of.  Thanks to all of you for being here and sharing your stories.  It helps a lot to know I'm not alone.  Some time ago, someone mentioned a doctor who wanted to do some research and would like to collect path slides.  If that person sees my post, I'd be glad to get some of the info on participating. 

Thanks for your information and welcome cornellalum.  Saw the oncologist yesterday.  In agreement with my surgeon, he's put me on Evista (Raloxifene); started it today.  Oncologist said I couldn't take the Tamoxifen and Evista's his 2nd choice. Since the tumor removed turned out to be all PLCIS instead of DCIS, neither doctor is recommending further surgery at this time.  I'll be having bloodwork and seeing both again in May.  Will have another mammogram & MRI in the fall.  Surgeon thinks there may be more biopsies coming from these and that I may decide to do mastectomy if it seems to become too much.  At this point, don't know - will just wait & see.

grandmaof4 - I would still recommend a second surgical opinion, due to the rarity and potentially aggressive nature of PLCIS, if your insurance will pay for it.  Mine did.  There is not a lot of consensus in the medical community about treating PLCIS, and having another opinion might help you feel confident in your choice of treatment.  I got three surgical opinions, and two oncology opinions before I made up my mind (and no, they did not all agree, unfortunately).  But at least I felt like I was well educated when I went forward.  Good luck to you.

Thanks for the advice.  Right now, I think I'm content with my doctors.  If my tumor had been found to be invasive, given the pleomorphic part, I probably would be seeking additional opinions.  The tumor removed ended up not being DCIS, was PLCIS as were the margins.  Day 5 on the Evista/Raloxifene and so far, so good.

Could you please post directions for how to send a PM?  Sorry, but I've not done it before.  When I click on your name I get your profile and prior posts, but don't see where to email you privately. Thanks,

Kitkit 

Linda, I was just reading back on some info here on this thread and forgot that you had to have your slides reread to confirm your diagnosis.  I have been having some of my own challenges recently and thus a little reluctant to send my slides for the study, I may need it in order to know what I have. I was enrolled in the TailorX clinical trial and was to have the oncotype test done on my "pleomorphic invasive lobular carcinoma".  I'm not sure if you are familiar with this test or not, but they require at least 2mm of invasive tissue to do the test.  Genomic Health received my tissue, but has asked for more tissue because they don't have the required 2mm of invasive in order to do the test.  My pathology report (thank goodness I have it), clearly states that there was .5cm of invasive. Do you know how to go about getting the second opinion from Sloan or do you think I could get it if I sent them in for the study?

On a brighter side, looks like I will have my DIEP reconstruction in May. 

Cathy

cornellalum, June 09 my pathology report indicated multifocal extensive classic LCIS and when it was reread, it indicated ALH with A small foci of LCIS.  So this particular test came back with two different results. The one pathology report that shows the PILC has not been reread, with the exception now of Genomic Health trying to do the onocotype test on it, so not a reread, but they do have to have invasive in order to do the test. In all of the different biopsies I have had done, they have shown ALH, classic LCIS, PLCIS as well as other fibrocystic changes etc., but it is the PILC that is concerning me the most. It is because of the PILC that chemo has even been brought up. So I have to find out.

Cathy 

Hi Chris

Yes it is mostly the PILC that I am concerned about.It would be what would indicate whether or not I should have chemo, as well as psychologically. I am seeing the oncologist this Wednesday and I am going to ask him about having my slides reviewed.

How have you been feeling since your surgery?  If I am not mistaken you had it about 1 month ago?  I hope you are recovering well.

Take Care

Cathy

Hi guys! I haven't checked in here in a while. My nipple-sparing PM with GAP recon is scheduled for the 30th. It's coming up very fast! I've been having some difficult days, but finally think my second-guessing is past. I'm looking forward to not having to worry about breast cancer anymore, tho I know recovery will be no piece of cake. I've been looking over my medical records and all the confusion about the initial diagnosis. And then I recently had a breast MRI and someone was still calling it DCIS! That diagnosis was scrapped after the re-read following my mastectomy in '06! This has been part of my frustration - not only having to educate docs about PLCIS, but having to explain to them that, no, I don't have DCIS - that was a mistake! This confusion seems to always happen with this PLCIS business! I figure I better explain and document all this stuff really well to mynew  breast surgeon so he knows what the heck he's looking for in the other side and doesn't get confused if something shows up there! In my first go-round with this, the surgeon opened me up and described the cancer as "striking" because there was so much of it all over! Great, huh?

I have been thinking of you Minnesota, and am keeping you in the land of + thoughts and prayers.

Thanks so much for your support, you guys. It really helps a lot!

I have not been back on this sight since my first post, and here i am 8 months later.  I had my double maste. last sept. 09,, expanders, and reconstruction, had nipple surgery 6 weeks ago and having tattooing done june 24.   Looking back now, It was the best decision i made, no regrets.  no looking over my shoulder and having peace of mind.   it was not horrible, they have come a long way with the reconstruction process.  i stayed strong and positive and took it one day at a time.  Looking forward to all my new tops and bathingsuits this summer,  and not worrying about if the LCIS would have turned invasive.   To me a 25% risk factor is just too high.  I read an article at the beginning of my research, If you were to board a plane and the pilot told you that the plane had a 25% chance of crashing would you get on??  I wouldn't, and that made sense to me.  i was not willing to take that chance.   I am so thrilled and not a single regret..

I thought I would share with you ladies that I had an MRI of my Rt. breast yesterday to have a good post surgical baseline and believe it or not it was "all clear"  I just continue down the bumpy road of close observation and meds.

Hey Omaha and Cornell!

OmahaGirl - you confused me cause you changed your name!  Was "omahagirl" too long to write? 

Hey Minnesota!  How are you doing?  I'm doing great!  All healed up, rocking the prostheses, and getting on with a worry-free life!