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

Cool - thank you!

@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.

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!!

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.

@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.

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.

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.

Good advice about weights and yoga. Mentors like me are reading these posts, and commenting from time to time. Medical advice is not given here, just shared personal experience. I'm not sure exactly which questions you are asking. But, for example, your oncologist is probably the best person to consult with about taking the letrozole every other day. But I am going to pass this on to a Moderator who might have some suggestions about links and articles related to Mayo and lobular cancer. Thanks for adding to the discussion.

I hadn't heard that oncotype doesn't apply to lobular cancer but I do know from all my research that most of the data and research isn't focused on lobular cancer since only 15% of women have this type of cancer. Honestly I am six months into to taking letrozole. I had stage 1A lobular - no lymph node involvement Grade 2 cancer. So I did bilateral mastectomies to reduce chance of it coming back in the other breast. I spoke with my oncologist and she said I had a 8% chance of long term re-occurance while taking letrozole and it is the best choice for lobular cancer. I have some joint pain and hot flashes and have had hair thinning. I take Bonafide Revere for vaginal dryness and that works great. I find that exercise is the best medicine for the joint pain and stiffness. Get into a gentle yoga class and lift weights for your bones. I have some osteoporosis in my hips and they immediately wanted me to do Prolia but my GP and breast surgeon said no - they both said lift weights and take calcium and D and magnesium and see where things stand in two years. I also read a study someone on this site shared that said people could take letroxole every other day with the same result but experts say the study had too small a sample. The fact is it has a 48 hour life in your body so taking it every day means you have higher levels than you might need? I would like to see some experts weight in on this. I am also 70 - I am very fit and active but I feel for those of us who feel torn between risking a return of cancer or living with horrible side effects for 5 years minimum. More research needs to be done for lobular cancer. Is anyone monitoring this site from Mayo able to answer our questions?

@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.