Connect
← Return to Lobular Breast Cancer: Let's share and support each other
Discussion
Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: Mar 10 10:12pm | Replies (344)Comment receiving replies
Thanks, Colleen. I feel we lobsters are a little bit of a unique group and the more specifics we can share, the better for all of us in the ILC category.
As for myself, I was on Letrazole for nearly a year and the joint pains were problematic. I also had concerns about becoming resistant to the Letrazole and have heard that Letrazole can bring back recurrences that are more difficult to treat...although I'm not sure of the accuracy of that statement. So I've just been switched to Tamoxifen, which is mostly for premenopausal women, which I am post, and which is not the preferred drug for ILC, so now I have new worries if I'm on the right drug. In addition, my genetic test showed a genetic risk for uterine/endometrial and ovarian cancer, which can be a side effect of Tamoxifen, albeit small, but I don't sleep easily knowing that. From what I've read, it takes about two years on Tamoxifen for uterine cancer to show up so hopefully this will just be a short-lived stint for me and then back to an AI. I'm 3 years out from lumpectomy and radiation, ILC Stage 1, Grade 3 pleomorphic, the trickiest of the tricky.
Replies to "Thanks, Colleen. I feel we lobsters are a little bit of a unique group and the..."
Connect
Hi... I have just been diagnosed (final biopsy pathology recived 2.28.23) with "pleomorphic lobular breast cancer with neuroendocrine features." HR+ Her2 neg. When I saw the oncologist he just scratched his head... and told us there is just no clear treatment protocol since it (PLIC) is so rare. Chemo works only 50% of the time on this goofball variant.
"Trickiest of the tricky" for sure... I started Letrozole last week and Ibrance probably tomorrow to see if we can shrink this 3cm invader. If next week's CT scan is clear, I will have a lumpectomy soon after, then, who knows? Ki-67 was ~70%...so this currently has free rein to run rampant. Hoping the Ibrance will put the brakes on this.
I am sorry your Letrozole side effects were unbearable. I am hoping my Celebrex keeps the aches and pains tolerable.
I feel like a walking experiment, but am confident in my surgeon and oncologist despite the initial head scratching.
Thanks for listening and for this "lobster" terminology. 🦞 So much easier to refer to a pleomorphic lobster. I wonder what it's neuroendocrine features are? Long eyelashes? Freckles??