Lobular Breast Cancer: Let's share and support each other

Thanks so much for passing it on to the moderator. I did share the research with my oncologist and another expert who agreed more research needs to be done and standard protocol is taking Letrozole every day. For now I am doing that and praying the exercise and yoga will help reduce joint issues and bone loss. I am eager to hear what others think. Thanks for your input. This is such a valuable tool for all of us.

@mimi77 Yes, I take mine before bed too. Not sure is it makes a difference. Exercise is really important for me. I try to do something everyday, walking or going to our fitness center. I also ride a bike. If I slack off, I begin to feel stiff. I’m surprised that they started you on yr med while you are still in radiation. Every place is different, I guess. The drs told me they introduce things gradually so side effects are clear. I didn’t really feel tired during radiation.

This comment is for us all, but really for our moderators and volunteer mentors- yes, sharing links to research and other sources on lobular cancer would be greatly beneficial to all of us so that we can make the best informed decisions for our treatment paths. I believe these discussion groups were created by Mayo to help support people in their journey, but I wonder if Mayo Clinicians and Researchers could use information we provide to one another to drive areas of research and novel treatment at the Mayo Clinic? Maybe Mayo could collate side effects of drugs, BC recurrence, metastsis, etc (not being identified to individual persons) to find general trends that could help direct research, treatment, and best practice on LCIS, ILC, and dual diagnosis ILC/IDC? In any case, I really appreciate people sharing their experiences here... our personal experiences are fountains of knowledge.

Hello,

I am 60 and have ILC stage 3 with lymph node involvement (22 out of 22 in armpit found to be cancerous). I did 20 rounds of chemo and had a single mastectomy on the right side. Had complications with dead skin and expanders so follow up surgery to remove dead skin and expanders. Next up 25 radiation treatments. My Oncologist did not recommend a bilateral. I too take Anastrozole at night with limited side effects. The side effects I do experience include minor hot flashes and more emotions. I am fortunate that my support system has rallied and have stepped up to help me manage the emotional part. Wishing you all comfort, strength and peace!!

@anatomary, you're absolutely right that the real experiences shared in the discussion forums are valuable for fellow patients, and also potentially to assist clinicians and researchers to better understand what matters to patients. For example, the discussions illuminate where there may be gaps in health education or identify research questions or areas for further study.

You may notice that we periodically post messages on Connect inviting people to take part in Mayo-led projects. Here are a few examples that were recently posted:
- Mayo seeking volunteers: Chemo-Induced Peripheral Neuropathy study https://connect.mayoclinic.org/discussion/mayo-seeking-volunteers-chemo-induced-peripheral-neuropathy-study/
- Mayo Clinic Arizona seeks Breast Cancer Survivors for Exercise Study https://connect.mayoclinic.org/discussion/mayo-clinic-arizona-seeks-breast-cancer-survivors-for-exercise-study/
- FULL: Mayo Learning on Women & Alcohol Misuse https://connect.mayoclinic.org/discussion/mayo-invites-you-to-a-virtual-learning-on-women-alcohol-misuse/
- Live outside US? Help Mayo improve website for international patients https://connect.mayoclinic.org/discussion/live-outside-us-help-mayo-improve-website-for-international-patients/

Other projects that Connect members have participated in include sharing their stories for publications and health tools for patients. As an example, several members from the Breast Cancer support group contributed to this book:
- Beyond Breast Cancer https://mcpress.mayoclinic.org/product/beyond-breast-cancer/

It's important to note that the discussions and member posts are never used for research or projects without member consent. You will always be asked. As according to our Community Guidelines, "Solicitations for research must be Mayo Clinic and IRB-approved. Requests for product reviews, such as feedback on apps, devices, etc. are not allowed without prior consent." See details here: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

Keep your eye out for a post that I'll be making later this week. We are looking for breast cancer survivors who live rurally to advise new research conducted by Mayo Clinic.

Cool - thank you!

@wyowyld thank you for sharing your decision about AI’s. I am 61, ILC stage 1A, right breast with no indication (pre-surgery) of lymph node involvement. I’ve decided to do double mastectomy, scheduled for next. Of course I will need to see what testing determines, but I have also read many studies about over treating early stage ILC and am very concerned about the effects of Letrozole - this is what my Dr typically recommends. You mention keeping up on most recent research and studies - can you recommend some sites? I’d like to follow the most recent data so I can make informed decisions. Thank you.

@marshgirl24

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.