Posted on: Jul 29, 2018 04:03PM
gwydiana wrote:
What a crazy and bizarre diagnosis. Am I the only Pleomorphic here?
Posts 1 - 30 (38 total)
Aug 5, 2018 12:15AM gwydiana wrote:
Seriously? I'm the only one?
Aug 5, 2018 10:04AM nash wrote:
No, you're not the only one. The ILC forum just isn't that active. If you run a search in the forum for "pleomorphic", some of our past discussions will come up.
Aug 5, 2018 03:46PM gwydiana wrote:
Nash,
How did you add that line "Pleomorphic ILC, initially diagnosed at age 38" at the top of your profile?
Aug 5, 2018 05:42PM nash wrote:
Go to “settings”, then “signature”. You can add the info there. Make sure you have the signature settings set to “public” view.
Aug 5, 2018 07:51PM gwydiana wrote:
Nash,
Thank you!
Aug 6, 2018 01:58PM beach2beach wrote:
I don't have that particular type but I agree, so not the typical diagnosis of cancer... ILC let alone and more specific sub-type. Makes us all extra special right? :)
Aug 6, 2018 04:55PM toomuch wrote:
gwydiana - I was diagnosed with PILC in 2010 just over 8 years ago. At that time, my MO told me that the pathology and oncotype score would dictate my treatment and not to give too much thought about the pleomorphic designation. I was premenapausal at diagnosis and had positive nodes with extracapsular extension so even with a low oncotype score I was treated with chemotherapy. I have been on Arimidex for more then 7 years and anticipate staying on it for 10 years. I'd be willing to stay on it longer if new research shows that it could be beneficial in preventing late recurrance.
Aug 6, 2018 07:49PM gwydiana wrote:
toomuch,
Thank you so much for sharing your info with me. I've been feeling so isolated lately!
Aug 7, 2018 07:53AM Trvler wrote:
I believe mine was pleomorphic but honestly, I don't even recall what that means anymore.
I am sorry you feel isolated. Cancer is very isolating. But we are here to support you.
Aug 11, 2018 12:29PM - edited Aug 11, 2018 12:31PM by MoonGirlJess
I have pleomorphic ILC also. From what I've read the subtype is rare
I am so sorry you are feeling isolated. Some days just suck
I’m here for you
Jess
Aug 12, 2018 08:24PM Fairchild wrote:
Hey. I'm still struggling to understand this posting system. Just got my path reports from bilateral mastectomies, and to my shock have pleomorphic invasive lobular c., as well as regular invasive lobular and invasic ductal. The pleo was a complete surprise, as the initial biopsy identified it as a lymph node within breast with ductal cancer. How weird is this?
The NP tried to minimize concern, but she really couldn't explain this report and it's driving me crazy b/c I can't understand the terms. I know the "new" pleo tumor is 2.5 cm, the largest of them all, has "extensive host lymphocytic response," and is E and P negative but probably Her2 "overexpressed" whatever that is. Over 50% of the tumor is tumor-infiltrating lympocytes (???), and the cells are S-100 negative but strongly Cam5.2 positive with patchy E-cadherin positivity. And there are signet ring cells that have intracytoplasmic mucin droplets by PASD stain.
I've been living with this report all weekend. Please let me know if you have any idea what this means. It is not exactly sounding good! Thanks!
Aug 12, 2018 09:06PM - edited Aug 12, 2018 09:07PM by gwydiana
Holy Cow, Fairchild. I'm so freaking confused by your report. We have a doctor here in Southern California that is an expert in Pleomorphic and I'll bet he can help you decipher that report. He also owns NantHealth and they have a test that actually tests a piece of your tumor against your own cells to determine what chemo regimen will be the very best and most effective treatment. The test is free if you qualify (make under $200,000/year).
His name is John Link. His clinics are called BreastLink. I highly recommend you contact them and they will do a phone appt if you are not local to the area -- very affordable and extremely informative. http://www.breastlink.com/doctors/dr-john-link/
Aug 12, 2018 10:17PM Fairchild wrote:
Gwydiana, thanks for the info....I'll start checking into it tomorrow. I'm halfway across the country, but I think the time has come for another opinion, so I'd be glad to have these records reviewed by someone who can understand them. Thanks so much!
Aug 13, 2018 10:48PM gwydiana wrote:
https://breast-cancer.ca/pleo-mor-arcin/
Aug 22, 2018 07:14PM IllinoisNancy wrote:
I was diagnosed with Pleomorphic ILC back in 2006. I'm still here and enjoying life to the fullest:)
Aug 29, 2018 10:38PM KMo1975 wrote:
Illinois Nan,
What advice would you give to a newly diagnosed Pleomorphic ILC patient? What test discovered the ATM mutation? What other genetic testing would have done in hindsight?
Thanks,
Sep 4, 2018 01:22PM - edited Sep 4, 2018 10:35PM by YATCOMW
I also had Pleomorphic ILC mixed in with ductal and a bit of IBC.....pretty much you name it.... I had it.
My tumor was huge..8cm...and at least 17 nodes were positive.....it was in my skin as well.
I am over 14 years out......did lots of chemo and have been on Femara from almost the beginning & haven't stopped.
There are others on the board that pop in from time to time that are also doing well with pleomorphic ILC so don't concern yourself too much if you don't hear from many.......most have gone on and living their life.
Hang in there.
Jacqueline
Sep 4, 2018 01:38PM gwydiana wrote:
Jacqueline,
Wow! I thought I was the only one with the massive tumor that went undetected for over 8 years! My tumor was over 18 cm!!!! Still dealing with the shock. Just started chemo last month.
Sep 5, 2018 07:49PM IllinoisNancy wrote:
Hi ILC Sisters,
Good News:) I had my six month CAT scan and full body bone scan and there is no new cancer!! I have been stable for a full year and winning the battle that started 16 years ago. There is hope for all of us.
Love,
Nancy
Sep 5, 2018 08:30PM Staceybee wrote:
IllinoisNancy - hooray!!! Keep doing what you’re doing and going!
Jan 5, 2019 03:51PM Fairchild wrote:
I see there's been more postings since I was here last summer. Since then I've been getting chemo, and pretty sick, but I'm done with chemo and on to phase 2 now...9 more months of Perjeta and Herceptin. Which will be followed by a phase 3 that I don't know much about now.
My onc told me we were doing the chemo (TCHP) because the risk of mets was higher initially with pleo. He didn't run an oncotype-- said he knew from the pleo designation the score would tell us to do chemo. I'm glad I did it.
Hope you all are doing well! I really appreciate hearing about encouraging stories!
Jan 6, 2019 05:17PM dakrock wrote:
Illinois Nancy glad you are doing good. I am curious about the skin cancer. I had mastectomy for ILC right breast on Feb. 23, 2018. 6 months later I had a melanoma on my face which needed to be removed by a plastic surgeon. I have quite the scar. Was your skin cancer related to the breast cancer? Just trying to figure all this out.
Thanks
Bonnie
Jan 6, 2019 07:21PM IllinoisNancy wrote:
Yes, my skin cancer was ILC breast cells. I have had it biopsied in my chest and stomach skin and both were ILC. I have another primary cancer that has been diagnosed called neuroendecrine. It started in my stomach and spread to my liver before I even knew I had it.
Jan 7, 2019 05:36AM Meow13 wrote:
IllinoisNancy, I noticed you are pr negative like me, have you been treated with AI drugs? It is suppose to be more effective than tamoxifen for us.
Mar 20, 2019 07:11AM morningdove wrote:
I was diagnosed with Invasive Pleomorphic Lobular Carcinoma on January 25th 2019. Had lumpectomy on Valentine's Day and getting ready to begin Radiation. It is bizarre, weird, and rare indeed. I am with you!
Apr 3, 2019 12:39AM gwydiana wrote:
morningdove, this is one of the most rare types of Breast Cancer. I also have the same diagnosis
Apr 3, 2019 10:43AM morningdove wrote:
I've always been told I'm unique but would rather not be so with a subtype of bc that is considered rare. Oh well, it is what it is. Hoping and wishing you well as we live with this diagnosis, go through treatment and hopefully kick the ass of cancer as it messes with us.
Oct 8, 2019 11:14PM 2loopyloopy wrote:
Hello everyone - what a roller coaster ride this all is. I have been lurking for a while, reading, reading, and yet more reading and learning heaps, and flabbergasted at the many differences in diagnoses/treatment/options there is. Not too many pleomorphics seem to be around so I thought I would add to the numbers. My primary diagnosis was aggressive pleomorphic lobular carcinoma but with multifocal LCIS & DCIS throughout my boob.
I was diagnosed via a regular mammogram in June 2019, calcifications showed up, some of which were later biopsied. That was when another small mass was detected, biopsied and diagnosed as invasive pleomorphic lobular carcinoma. An MRI then showed up lots of additional DCIS (part of later path report after mx) but very clearly visible and a mastectomy was my only option. As I am in my 60's I decided against reconstruction, small chested anyway, oncotype etc not done in NZ, no family history so gene testing not been suggested either. Now on Letrazole for the foreseeable future, and at this point no real discernible SE apart from the occasional hot flush. Hmmm I thought they were long gone. I'm another one who has to do things differently - not sure I like this distinction here though
Dec 7, 2019 05:04PM MikaMika wrote:
Hello,
Could you please help me to understand what makes ILC pleomorphic?
I don't see this word in my pathology report. But maybe there are some features that make ILC pleomorphic?
Dec 7, 2019 06:27PM OnTarget wrote:
I have ILC with pleomorphic features, whatever that means. Maybe not enough cells are pleomorphic to be called pleomorphic? I have no idea.