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

@susandesign
Welcome to Mayo Clinic Connect!
The breast cancer support group is quite active and you already had one very good response to your dilemma.
It is hard to know what to do when you are in the middle of being diagnosed.
You should try to get a second opinion and a third if needed. This is the time when you want to know that you are on the right track.
Your doctor may even be able to recommend someone.
Otherwise, look for a University Medical Center.
I was diagnosed 31 years ago. With my cancer I didn’t really have an option and had a mastectomy. I got a second oncology opinion at Sloan Kettering- agreeing with my oncologist’s plan.
You will have time- you want it done right.
Wishing you well!

Hello @susandesign I am, as always, sorry to hear of anyone new entering this journey. This forum is a really great spot to land, however...I think 2nd opinions always a good thing - I got one even while I was in the middle of radiation just to know that I gathered as much info as possible

On my 2nd lumpectomy (re-excision) my margins came back clear. I am not sure if this is helpful but I had done research and asked my surgeon to take a wide berth bc I wanted 2 mm clearance if possible. I am not sure if she did for original lumpectomy but perhaps the re-excision. That meant no cancerous cells within 2 mm of the margin as opposed to a well accepted narrower clearance. I honestly don't know how they decide what to take and what not to take (they cant really see during surgery and ILC especially tricky?). Anyways, I also wanted to avoid mastectomy but also went with what my MD indicated. She recommended lumpectomy (and re-excision) although if I had wanted mastectomy then could also choose - she was not recommending it for me at that time. I believe if my re-excision had come back without clear margins again she probably would have recommended mastectomy like your MD. I had one of 2 lymph node result say "rare isolated tumor cell" which all insisted is considered Node Negative (still scary). They radiated up into my node area to handle that. Of course I worried that by that time much time had passed but they didn't see a problem with that.

I am no MD and only offer my perspective but think a 2nd opinion always good, but there is the scare of it taking up more time and delaying treatment? Which is why I continued on my path and then finally got a 2nd so late - by the time referrals etc worked out I was into radiation.

I completely understand the anxiety. it's such a scary time and while family and support are usually good, nothing helps what's inside you head, and when its YOU is just You in that mind. I can see how this would be confusing and stressful and also scary. I guess I would weigh peace of mind and also timing - how soon could they do a 3rd re-excision, have they ever done that, and why path taking so long. Also - I really had to consider how much I trusted my surgeon and the practice/my medical team being up on the latest so that I could feel that while many decision were up to me I was not the one calling it all and leaving it all in my hands. I suppose in other words if your MD is recommending a mastectomy perhaps it should be considered based on her experience and knowledge? I know these are no answers but I can very much see how you have sides to consider. I do believe mental health and anxiety are a factory and perhaps should be up on the list in terms of "what will give you more reassurance" down the road. And lastly - ughhh this all really stinks and I wish I could swat it all away.

I wish you the best - please keep us posted and please take time to give you brain a break if possible - yoga, hike, walk, girlfriend time. I have found that helpful. Much love to you!

Hello there. I am new to this forum. I have ILC and had a lumpectomy and sentinal lobe removal and two of the three were cancerous. In addition, the path report had little dots at the margin. I went in for a re-excision. That path report took a long time to come back, and still showed dots at the margins. I am wondering if your last path was clear, and if you went on to radiation? My doctor thinks mastectomy would be safest (and easier for her so she doesn't have to worry about the difficulty imaging these hard to see dots) but trying to get second opinion. I would really rather not have mastectomy. My anxiety is through the roof, and I am very bereft. Thank you for listening, my best wishes to all.

Please tell me a where and which Dr. I am so nervous about radiation. I've had a "slightly enlarged heart" show up on CT that are ordered for a different cancer type. And I already have issues with my lungs. I've spent a lot of time trying to find a place that offers prone radiation. I will be checking Mayo Jacksonville. Thank you in advance.

Dr Jason Mouabbi at MD Anderson -Houston is an ILC specialist & is excellent.

Many thanks! Wishing you well 😁

I get the same scans as you 4x a year. My doctor watches the typical CEA and cancer tumor 27-29. I just saw her this week and she explained what she has said in the past… they are not a reliable indicator of disease. The scans are stable as is the way I feel. I’m still interested in a lobular specialist in my area though. Wishing you the best.

ILC here. I'm going in for second set of follow up imaging 11/10, CT of chest, abdomen, pelvis, plus bone scan. I'm wondering what specific markers are checked and watched for you? Markers have not been mentioned for me, and I think that is an important point to bring up at my next appt.
Good luck to you, and all of us.

I qualify for the 5 day also. I go to Mayo Fl.
It will be in a prone position. Can you please share your experience?
Thank you.

Mayo in Rochester has lobular oncologist.
Prayers for you. I too have ILC and am treated at Mayo in Fl.