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

Just posting an update - I will be 9 years out from my first diagnosis of Stage 0 lobular and 7 years out from my Stage 1 diagnosis of lobular in November. I am eligible for Medicare (finally) at the end of the year and I'm changing doctors and insurance and I'm hoping to get a little more support in my follow up. I will keep you all posted but I would like an MRI just to be sure. There seems to be little follow up in my case? I think I'd get some peace of mind with knowing what's happening in my remaining breast tissue (I had a bi lateral mastectomy). I am low risk but not 'no risk' and I'd like to catch anything early if possible. As I approach the 10 year mark I've heard those pesky cancer cells might have had enough time to rally, but I hope not. Thoughts or anyone out there who is at the same point and has had some follow up recommendations from their doctors to share? I will share what I find in January next week as well. By the way, really enjoy the term 'lobsters' for our condition. That gave me a bit of a chuckle today.

I did wonder about the tumor size, but the doc did say 1A, no lymph node involvement.

I had a lumpectomy with radiation and as I had my tumor on the left side, I did the breath hold technique when receiving radiation. I did fine.

You should have no problem especially if your doctor has given the okay.

I’m 64 and have been taking Arimidex with no problems.

My husband also has congestive heart failure and is taking the same medication as you and is doing very well at 68. Although he won’t change his diet. ♥️

Maybe lobular breast cancer is categorized differently but a 2.8 cm for invasive ductile cancer would be a higher stage than 1A. (The tumor removed from my breast was 5mm, 7mm including clear margins. And the stage was 1A.) I mention it in case it was a mistype.

I know these treatment decisions take a lot of thought and trying to balance everything. Second opinions, especially with a doctor who carefully listens before carefully explaining options, cam make a huge difference in one's confidence in choosing what to do next.

I don't want the radiation because I have CRPS.

No her2 though for myself

Im new to this also the same results as your but left breast I'm 56 and 1 1/2 week into it I think I've decided just go all the way and get implants because I've had a pain spot in right but nothing was picked up and I don't want to go through this again. I'm calling them Monday with my decision.

Hi,
Mine is recently diagnosed (ultrasound, MRI, biopsy) ILC stage 1A, grade 1, er+, pr+, HER2-, 2.8 cm tumor in right breast, unclear 5mm mass right next to it. Age 67.

My other important issue is that I have heart failure - diagnosed in Feb 2022. ( when it rains, it pours,). Taking Metroprolol and Entresto for that. Feel fine, walking daily, meditating, and high blood pressure issue has resolved on a combo of the meds and eating a whole food plant-based diet. Also have osteoporosis, on no meds for that.

Still going thru the decision stage, but think I want a lumpectomy. The doc says I must have radiation after that, and since it’s the right side, it shouldn’t affect the heart.
I don’t have confidence in that. What were people’s reactions to radiation?

And I don’t like what I’m reading about all the drug (aromatase inhibitors) side effects - especially with my other medical issues.

Tough decisions to make.

Thanks, Colleen. I feel we lobsters are a little bit of a unique group and the more specifics we can share, the better for all of us in the ILC category.

As for myself, I was on Letrazole for nearly a year and the joint pains were problematic. I also had concerns about becoming resistant to the Letrazole and have heard that Letrazole can bring back recurrences that are more difficult to treat...although I'm not sure of the accuracy of that statement. So I've just been switched to Tamoxifen, which is mostly for premenopausal women, which I am post, and which is not the preferred drug for ILC, so now I have new worries if I'm on the right drug. In addition, my genetic test showed a genetic risk for uterine/endometrial and ovarian cancer, which can be a side effect of Tamoxifen, albeit small, but I don't sleep easily knowing that. From what I've read, it takes about two years on Tamoxifen for uterine cancer to show up so hopefully this will just be a short-lived stint for me and then back to an AI. I'm 3 years out from lumpectomy and radiation, ILC Stage 1, Grade 3 pleomorphic, the trickiest of the tricky.

Wow Susan. That is hard to wrap my brain around. So glad that MRI technology is around! A walking meditation is the best!!