Stage 1, very treatable invasive lobular carcinoma

Diagnosed stage 1 on 10/10/24. Went with lumpectomy as 3 different MDS from 3 different hospitals said the same thing.
Radiation starts next week. I do wonder at times if I should have had mastectomy.
Because it was invasive lobular I am having whole breast radiation, which I did not know ahead of time. Now I am at risk for heart and lung complications since it’s my left breast that will be radiated.
I am a nurse and wish it could have all been discussed ahead of time from surgical medical and radiation oncologists viewpoint.
My physician team are from Dana Farber, Mass General, and Brigham Women and I do feel like I have to trust what they say. They all agreed.
Best of luck.

I too had stage 1a ILC, but I also had IDC in my other breast stage one. Both were HER2negative, HR positive for progesterone and estrogen. I chose the bilateral mastectomy for recurrence reasons. I also was trying to avoid radiation. Doing well, I have another baseline scan after 18 months out of initial surgery to check and make sure everything is und er control. I did not undergo chemotherapy or radiation. I do take anastrozole daily, which is a bit tough on my joints, but I am doing fairly well with exercise and controlling my diet.

Hi @kandisn, I was also recently diagnosed with invasive lobular carcinoma. The decision of lumpectomy versus mastectomy is a difficult one for all of us. During a consultation with my surgeon, after coming to the decision of mastectomy, she looked me in the eye and asked if I would be ok with that decision if the tumor turned out to be smaller than we expected (3.5 cm). I thought that was a great question. It confirmed my confidence in the decision. My answer was still 'yes, mastectomy', because of my particular situation. (This is my second primary cancer, and that makes things a bit messier.)
I had a single mastectomy just over three weeks ago. My pathological stage is 1B, a 3 cm tumor with micro metastasis to one lymph node. I'm doing well, continuing to recover. Good luck to you! Let us know how you are doing.

Mastectomy does lower recurrence risk and I see it as quality of life could be higher without dealing wiht recurrence and its corresponding treatments. Lobular is unique in that it is much easier for them to miss other smaller tumors or pieces of the cancer since it sends out tentacles, whereas invasive ductal is a distinctive tumor with defined edges. With that said, the plastic surgeons really make full reconstruction sound so 'easy' and simple, when in reality, its not. There are a LOT of factors that they're not upfront about. Also reconstruction complications are much higher than just mastectomy without immediate reconstruction, so please question your surgeons about that and understand your comfort level with possible infections, wound healing issues, repeat surgeries, etc if you will do reconstruction before radiation and/or chemo. Its a very tough and personal decision. If you haven't yet, check out https://lobularbreastcancer.org/ Best resource dedicated to lobular. Most BC sites generalize across all BC and are slanted towards ductal info. Best of luck to you.

Thanks, always great to get other insights. Good luck with your journey.

Thank you!

Hi ladies! I was treated at Dana Farber after a lumpectomy for ILC Stage 1, grade 2, 1.8cm, no nodes in Nov 2022 at 57 yrs old, 19 radiation treatments on right breast. I did get a second opinion at Mass General regarding surgery option and both recommended lumpectomy - I got in sooner at MGH so had lumpectomy 6 weeks later. I'm happy with my decision but we all worry about reoccurrence and surveillance which is not consistent among oncologists. Lobular is finally getting more attention but even my MO at Dana Farber still considers it "similar to ductal and I had to beg to have MRI surveillance. I'm now 59 yrs old, and 18 months into Letrozole which has pushed me into osteoporosis but feel fortunate my lobular was caught early!! Good luck!!

ILC Stage 1 in left breast, early catch 2 years ago next month. Initial meeting with surgeon had me ready for in-out of Lumpectomy. But MRI found, biopsy confirmed second tumor same breast, making lumpectomy an option “only if patient motivated” per the cancer board. By that time had been able to do lots of research on ILC and talk with family members about their breast cancer journeys( none with ILC!) , and what if anything they would do differently given the chance. My older sister did not regret having lumpectomy the first round, but did with a recurrence 10+ yrs later wish she had having done double vs single mastectomy as the anxiety surrounding required surveillance has for her grown increasingly harder to deal with each year. From all that info for me at nearly 72 yrs old my decision-making all became about maximising my quality of life going forward and double mastectomy with reconstruction was my decision, supported strongly by my husband. Sentinel nodes were clear so no radiation. Did several months from b4 surgery and after on Anastrozole but d/c’d, again based on my quality of life goal. Other than ‘hating’ the expanders (felt like little bricks) and dealing with the time it took to get my implant surgery scheduled, I sailed thru the entirety of this with no issues to-date, knock-on-wood. First round of annual check-ups with surgeons and oncologist in late summer all went well. Will have MRI next year as bi-yearly is the protocol for implants. NO regrets from having chosen this path! Wishing you only the very best on on your journey as you now seek and find the path that’s right for YOU.

Thank you!
Appreciate feedback!!

BC reoccurrence. Had ILC 23 years ago, Stage 1, w/ lumpectomy chemo and radiation. Was diagnosed again just 10/22/24 with ILC. Had initial lumpectomy, stage 1b or 1c, no node involvement via imaging (ultrasound and MRI). 23 years ago my cancer was ER pos but they didn’t have the capacity to determine percentage back then. So now because it is same breast, same quadrant with lo estrogen, not only have to have mastectomy but will have to have chemo again. If I knew I would be dealing with this 23 years later, do I wish I had had a mastectomy then? Not sure. I’m 67 and was 43 the first go around. I do have the chek2 gene mutation as well. I will likely try implant reconstruction but the bigger surgeries will be post chemo.