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

This is more a question about whether to stop. I'm stage 4 and between radiation and Kisqali, my immune system has taken a beating and leukocytes are low. I have no evidence of active disease. My my mets is bone and the lesions are healed and shrunk. It was recently put to me that we could do Divitum testing on Kisqali and a few weeks after stopping Kisqali to see if it changes. In other words, is Kisqali suppressing growth. This is tricky. Immune system is also needed to prevent progression. I desperately want my leukocytes to recover, but if I stop Kisqali and subsequently progress, I'll truly regret it. I could progress either way, but it's hard to stop a med when it has held off active disease for 3 years. And I also take letrozole.

One of the struggles I have with this is trying to determine how helpful continuing to take Letrozole is for me with ILC. I have an early stage ER+, PR-, HER2- cancer, Stage 2, detected by a 5mm mass. But after lumpectomy, there were two other tiny masses that never showed up on mammogram or MRI. Negative lymph node. I was also treated with radiation. The Predict tool is based on ductal carcinoma, or, at best, all breast cancers lumped together. At 72, the Predict tools predicts very very little advantage from using an AI, and I'm definitely not liking the symptoms from Letrozole, or it's risk to my bones. I already have severe osteoporosis. But I suspect the Predict tool underestimates the impact of an AI for ILC vs ductal cancer. Size of the tumor is a variable in the Predict tool, but what is the real size of our tumors when they're stringy, and multiple locations and "hiding?" Does anyone else have thoughts about the effectiveness of AIs for us?

It's unfortunate that though lobular carcinoma was recognized as a very distinct type of breast cancer, different biologically than ductal carcinoma in the 1940s, we are still left with treatment specific for ductal carcinoma, a cancer with very different growth pattern. People think it's because it's 10-15% of breast cancers and so overlooked. But it still represents more diagnoses each year than ovarian cancer, so the numbers are significant. One of the main problems is that it rarely forms lumps and research wants to be able to identify changes in measureable disease. There are sometimes a few lobular patients included in research for drug approval but the numbers are too small to break out a separate analysis so the effectiveness on ductal carcinoma may not reflect the actual effects seen in lobular.

Go to LBCA Lobular Breast Cancer Alliance website. There is a wealth of information and guidance. You are right: Lobular Cancer presents patients with a steep learning curve. LBCA is the place!

I’m in.

Sorry, yes, I meant ILC for the Lobular Breast Cancer group.

@llthomson sorry, do you mean ILC? I had a lumpectomy for my 7mm ILC tumor plus 5 days of radiation & taking half-dose of Tamoxifen. I was 72 when diagnosed. Every situation is unique.

@pgiggers
Not an easy choice, but what stage you are at, any genetic factors and that sort of thing play into where to have a mastectomy on one or both. I had DCIS, stage 2-grade 3. Genetics BRCA2 mutation. My tumor also had Her2+ growth and all in all i chose a dbl. I was not interested in watch and wait. BUT, i know get all the facts on your diagnosis and possible prognosis if only one is removed.

Have just recently been diagnosed with ICL and they have told me I could do a single or double. I really can’t have a lumpectomy due to having 4 lumps in my right breast. I have met with surgeon and will meet with medical oncologist this week to see what he recommends for chemo or other treatment.

Has anyone had mastectomy for ICL and the cancer came back? I had two different opinions from two different oncologists that a mastectomy is required for ICL.