Just diagnosed with invasive lobular carcinoma (ILC): Any advice?

Hi! I am very surprised Dana Farber onco ( I do not see Otto but feel team approach is a plus at Dana) waits a full year and while it will be a diagnostic mammo I feel MRI would be more helpful given my dense breasts. All we have is early detection so I just don't understand but Dana is typically very conservative. They feel the tissue must "calm down" - but I still would feel less anxiety with a 6 month post surgery scan. Keep me posted.
I've been on Letrozole for 4.5 months and fatigue is my biggest complaint - the joint stiffness usually improves once get moving. So far - very tolerable! xox

Well initially I was told this August would be my first follow up and I believe the surgeon mentioned scans. See surgeon, rad onc and med onc in August. That will be toughly 6 months post 1st surgery. I will do labwork in August before I see med oncologist in August. But when I went in 6 weeks ago concerned about a seroma they seemed to indicate possibly no scans for a bit longer. I am going to call and clarify. Given my ILC went from -clean mammo' to 2 cm in 9 months I definatelt am hoping for scans sooner than a year. Dana Farber is supposed to be top notch so interesting to hear your path. That is where that well known lobular focussed doc Otto is correct?

How is Letrozole?

Hi @lhhwoz - my ILC very similar - at 57 yrs old and finished radiation end of January and now on Letrozole. I feel there is no std protocol for follow up scans. My oncologist at Dana Farber feels any scans (even while I have very dense breasts) are not helpful in a year! So I have a diagnostic mammo scheduled not until a year (Oct - regular mammo month). May I ask what your timeline looks like in terms of follow up? Thanks so much!! xo

Yes! This site is amazing! We are nearly identical, but I am 64 and only needed one surgery(Feb 8, 2023). On Anastrozole nearly one month. Doing LIVESTRONG exercise program at YMCA - free to cancer "patients" past or present. Lots of great exercise keeping me active and happy!

Interested to know about the trial at MSK. Where did you receive primary treatment? Why not do radiation there? I have 5 cm ILBC and I am currently on chemo, after that, surgery (the details won’t be determined until final MRI after full 6 months of chemo). I would really like to avoid or keep radiation to an absolute minimum and I would consider going outside of MD Anderson if necessary to do that.

Just popping back on to this amazing site and thought I'd response. I am 55yo, I was diagnosed with Stage 1 ILC. Had x2 lumpectomies /sentinal node removal in Jan/Feb (1st time the margins were not clear), followed by radiation and now on Anastrozole for many years. I was Node negative technically although they found "isolated tumor cell) in one node. No chemo as my Oncoscore was below 25. I am 2 months into Anastrozole, healed mostly from surgeries and radiation (minus scar tissue, possible seroma which seems to be getting smaller). Feeling like myself, staying very active with hiking and weighs and stretching....and now I hope and pray for no return of this cancer. Wishing you all the best-this site is a gem.

The expander is the biggest pain! I am 3 weeks post replacement surgery and no more pain. If you can, contact a lymphedema therapist to help with the pain. I wish you well.

I found that the early days of knowing I had cancer were a blur. Trying to read more about breast cancer was terrifying. Learn about your particular cancer, its size and location in the breast. Treatments will differ based on a lot more information your doctors will get from your tests. Try not to compare what others have gone thru to your situation. We are all different and so are our cancers (even if they are in the same category of cancers). My only other advice is to eat well and keep as active as you can. Both a good diet and activity will help you stay strong. I wish you well.

Hi All! I also have/had ILC and when first diagnosed surgeon thought it felt/looked like a 2 and 3 cm tumor in different parts of the breast. I am small breasted so she recommended a mastectomy which I got nearly 4 weeks ago.

When she removed it, the pathology report measured it at 7.7 cm bc there were no non-cancerous cells between it. It was also a grade three tumor. Any tumor larger than 5 cm triggers a recommendation for radiation and chemo. But bc it hadn’t spread to nodes I got an oncotype test — and scored low enough to rule out chemo. Now I am headed for radiation but will likely enroll in a clinical trial at MSK for a 5 day course (vs 5 weeks). Then wait six months and get the exchange surgery.

Things I wish someone told me: The pain/soreness/healing takes months. I thought bc they recommended I take 4 weeks off I would feel better in that time. I am still very very sore and have sprained an intercostal muscle in lower rib that has made it impossible to make a lot of movements without a sharp pain. I should have rested more throughout.

Also: I wish I had been told more about going flat. I am an A, and feel in many ways that reconstruction was a mistake for me. My husband will be appreciative but it takes longer to heal with reconstruction and there are more chances for things to go wrong.

I meet with my oncologist soon where she will likely get me on Tamoxifen, which I am dreading. I am trying to learn more about how my diet will help me deal with hot flashes and the other side effects. I am 47, premenopausal.

I also highly recommend doing lots of breathing exercises before and after surgery—breathing in hope and joy and healing and breathing out pain and fear. You will get through this and be ok, just care for yourself and be patient. Sending positive thoughts for your treatment and recovery.

How are you doing Francine? Yesterday I was diagnosed after a biopsy with invasive lobular carcinoma. Have appointments with a team of doctors next week. Don't know what to expect. Having an MRI before the next appointments. Don't know what stage this is or anything yet.