Pleomorphic Lobular Carcinoma Triple Negative

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Is there anyone out there at all who has this type of breast cancer and if so what treatment did you get ?

Gohan1983

Pleomorphic Lobular Carcinoma is agressive variant of ILC, which most frequent shows Luminal B-like profile. But in opposite to classic, indolent variant (which almost always is HR+ and HER2- and low Ki67; Luminal A), IPLC exhibits HER-2 overexpression or lack of ER/PR receptors, but can have androgen receptor (AR) expression. Triple negative IPLC belongs to Luminal AR (LAR) molecular subtype. It is less aggrresive form of TNBC breast cancer and often has PIK3CA mutation, so PIK3CA inhibitors (everolimus, pictilisib) and/or bicalutamide (androgen inhibitor) may be used as efficient drugs in this rare subtype.

fleur-de-lis

Gohan, I do not know if you will be checking back in on this thread, but you are one of the few people on this site who has mentioned AR receptors and the lobular neoplastic spectrum. I had a Phyllodes tumor with ALH findings, and, although not much is truly known about this tumor substrate, most medical journals that I have read suggest that they present with ER and PR positive findings......mine did not, it presented with AR+90% and IGF-1 positivity.

MO at MDA put me on Metformin after the IGF-1 findings. My blood glucose levels were fine, but I am a reactive hypoglycemic.....interestingly enough....the Met levels off my BG perfectly....no more low BS, no more shakes, sweats and light headedness if I miss eating every 4 hrs. And I had to eat large amounts of animal protein prior to the Met, just to keep my BS levels stable.

Although I am not presenting a case with ILC here, I still find it very interesting when someone brings up the AR receptor, as, to the best of my knowledge, it is not a receptor that is typically looked for in other types of BC. I have had high AR levels and low ER levels in my 30-40's. Doctors actually recommended supplemental ER/PR back then....but the hormonal cancers in my family caused me to shy away from that option.

Wondering how high levels of Prolactin might effect this sort of Cancer.....and I am not suggesting the normal high levels that are part of a woman breast feeding her child........I am talking about elevated Prolactin levels brought on by "other means", such as Pituitary tumors/ adenomas ( one out of four people have a Pituitary tumor, and they do not know about it, since it is not secreting any excessive hormones...henceforth, benign) or other endocrine disrupters in our lives

I was exposed to DES in urethral, so this may have caused some of my issues, being a DES daughter

Ginagia1

I do. It was discovered at mastectomy as a primary. I was diagnosed with ductal carcinoma with a small percentage of e+ DCIS.

I just started Xeloda today as a preventative course for one year.

I’ve been reading about this type, and it scares me more than the ductal cancer. There is so much to learn

lightseeker

Hi Gina,

I'm in this group, too. I often come and read Gohans post - I hope it's true.

It gives me comfort.

I'm going to MSK next week to see Dr. Traina, a TN specialist. My oncologist has only treated one other lobular TN. She is doing well, many years out. She only underwent standard ACT chemo. She was AR+.

If I learn anything, I'll post.

xox

Eve

Ginagia1

Wow! We are such special, unique people!

Arghh. This subtype scares me.

lightseeker

Thought I'd add to this. I was dx with PILC TNBC and was NOT luminal/androgen. I was shown to be basal like, so PilcTN is not always lumonal type.