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

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.

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?

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.

I’m glad to find this forum. I’m 69 and was diagnosed with ILC in March. ER+, PR low +, HER 2 neg, Ki-67 > 30%. Luminol B. Twoseparate areas of cancer identified. Chose right BMX after much research and Stage 2, clear margins, neg nodes. MammaPrint showed little benefit from chemo so will probably just do hormone blockers. I had thyroid cancer in 2010 and right hemicolectomy 2025 due to high grade dysplasia polyps. I previously had hysterectomy with in 1999 at age of 42 due to fibroids. I do worry about recurrence but will be vigilant with my follow ups.

@llthomson
My surgeon first said he thought lumpectomy would be okay for me. I chose mastectomy anyway and he did say after pathology came back showing second spot of lobular that I probably made good decision. Every patient different and I chose because my Ki-67 was high. Just my comfort zone.

@vissdoc
You are so right. Fear is our biggest obstacle with breast cancer. Sage advice on prioritizing ourselves on this journey!

I would like to see a separate formum as well. I was diagnosed in 2/25 with stage 1A grade 2 no lymph node involvement and opted for bilateral mastectomies. HR positive HERS negative. I have been in leteozole which seems to be the AI of choice for ILC for a year. I suffer mostly joint stiffness. Hit flashes periodically. I would like to see oncologists look at AI drugs for ILC. I didn’t need chemo or radiation since I had bilateral mastectomy and clean margins. Still I don’t understand why more specific therapy is targeted to ILC. Why isn’t my estrogen level tested regularly to determine if I need to take letrozole every day? Why isn’t my weight and size taken into account in determining dosages?

Is there anyone moderating this group that could establish a separate group for us with specific infornation for treating ILC?

Thank you for all your comments. I am trying hard to understand this disease. I had a double mastectomy after being diagnosed with invasive lobular carcinoma. After the operation, they found that my right breast at a 8.9 cm, 6 cm, and 6 cm tumors....before the operation they thought it was a 2.2 cm. They thought my left breast only had invasive lobular carcinoma in situ....turned out that it had 2.2 mm, 6mm, and 2 mm invasive lobular carcinomas. I knew something was wrong before the operation because my breasts were shrinking like crazy. I am in radiation for 33 sessions plus 5 if needed. Then...I am to take Anastrozole for 10 years. I put on Aquaphor 3X a day to help with my "delicate" skin. I have monoclonal B cell atypical CLL trisomy 12 Kappa,Sjogren's, and an IGg and IGm immunity disorder. I was on chemo but now just get Gammagard, B12 shots, and iron if needed. My WBC, RBC, and HGL are always low but my Monocytes are always high. At any rate, I continue to try to understand, still try to keep a happy outlook, and am looking for any advise as per this disease. I was a special education teacher so love to do research....Thank you everyone.

Hello @wews, we are always improving Mayo Clinic Connect which includes opening new groups when the volume of posts around particular topics or diagnoses demands it.

In the meantime, there are a few more discussions about invasive lobular cancer, you can find them here, https://connect.mayoclinic.org/group/breast-cancer/.

There is value to keeping the breast cancer questions 'under one roof' so more members are able to see them and partake in them.

@gailmarienewton The LBCA website will give you a lot of information and help! You are absolutely right: Lobular is very different from ductal cancers. The LBCA site will explain the 'single file' growth pattern resulting in difficulties in imaging and ability to spread (which you have already experienced). ILC tends
to be highly Estrogen sensitive, so AI inhibitors are one very effective tool. Keep up the research. LBCA will help you find your people!