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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: 1 day ago | Replies (558)Comment receiving replies
@timely So sorry to hear about those side effects. I do think the docs should get together at the start and tell us more about our choices. I feel that "You'll have to take a pill for 5 years" is thrown out and no one is prepared for the side effects of losing estrogen. Dryness is one thing but what you are describing is something else. I too am ILC stage 1b. lumpectomy and 15 days of radiation. I'm on anastrozole and, knock on wood, so far have no terrible side effects. A friend of mine did complain about letrozole and was switched to anastrozole with better results. We are all different and our bodies react differently to these meds. I am leery of any of the prognostications that might be made on a mixed base of patients, ductal and lobular. I would like to see lobular only data. This cancer is diffuse. The cells scatter and travel and can show up undetected in the lining of our stomachs, brains, ureters. Creepy. And it does not respond well to chemo. I too am in my late 70s and I don't want to go out, fighting one of those dreadful situations. One of the articles I read said that Mammoprint, Oncotype do not apply to lobular. ??? And yes, I too would like to hear more about lobular on this thread which, thank goodness, is dedicated to it.
Replies to "@timely So sorry to hear about those side effects. I do think the docs should get..."
I have had to stop taking Leterzole completely which I have been off of since 07-07-2025.
I was supposed to start Exemestane on 10-08-25.
I have lost muscle strength from Letrozole.
I reached the point on Aug 26th where I could not walk or bend or put weight on my right leg and went to Orthopedic Urgent Care.
I still can’t walk without a walker or 4 point cane.
I also have bone-on-bone knee osteoarthritis and osteoporosis.
I can’t take Anestrozole as I took one tablet and the leg muscles in both legs gave out.
Medical Oncologist said I could not take Tamoxifen because of blood clots.
I was terrified to start Exemstane as I might get carpal tunnel syndrome or hand problems.
I need my hands to get around.
So, new medical oncologist agreed with notes from my retired medical oncologist to stop if there were problems.
Took Letrozole for 2 1/4 years. Got 1 month of radiation at a high dose two months after surgery.. Got cording after lumpectomy and then 8 months later, breast lymphedema.
****Now, the great punch line to this story is that after 3 years of diagnosis, I went back to the surgery lab report.
At this point, I have more knowledge and understanding of what I am reading.
It says ILC…
Under that, it says that ALL tissue was Pleomorphic LCIS.
So, I am not ILC 1B. it pre-cancerous
Pleomorphic ILC in situ….1B.
It is not cancerous….
1 in 100 of women listed under ILC are Pleomorphic.
Breast surgeon + medical and radiation oncologist said I was ILC and quoted lifetime expectancy of ILC.
This is Pleomorphic with different life expectancy and possibilities.
So, I am faced with trying to regain muscles in legs both before and after knee surgery.
If I took Exemestane before or after surgery, it would destroy any muscles to keep the legs functional.
No one wants something rare…LOL.
Not much written about it.
So, I am in “ no man’s land” of figuring this out on my own and choosing walking or not walking and being bed bound or in a wheelchair from any more AI ‘s.
(Sorry for the drama, but this seems to be what my situation is.)
One of 2 paths and really unfortunately unique.
I see the Orthopedic surgeon in December.
Plus, I have AIMSS which causes the muscle and joint pain from
AI ‘s.
Any women with AIMSS carry genes which may cause this syndrome. They have not yet definitively agreed on this yet in studies.
So, my particular genes must have a field day with AI’s…LOL.
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Same here.77, ILC lumpectomy and halfway now through my 15 radiation treatments. I take Anastrozole before going to bed and no noticeable side effects. Hopefully bone scans in November will be okay. Like you, I hope not to have to do all this again! Some fatigue from radiation, but overall I am feeling well. The different supports (exercise program, group therapy, individual guidance,survive well) from the Cancer Care Center have really helped physically and mentally.