Newly Diagnosed with ILC (Lobular) • Seeking Advice While Waiting for Oncologist
Hi everyone,
I am new to the group and recently received my biopsy results. I have been diagnosed with invasive lobular carcinoma (ILC). My markers came back ER+, PR+, and HER2-. I don’t know my stage yet, as I am currently waiting for the call to schedule my initial consultations with a medical oncologist and a breast surgeon. As you can imagine, this waiting period feels incredibly overwhelming. Since lobular cancer has its own unique growth patterns and treatment pathways, I wanted to reach out to others who share this specific profile. If you have a similar diagnosis, I would love to hear your advice:
- What do you wish you had known or asked during your very first oncology and surgery appointments?
- Did your doctors order a breast MRI right away to map out the lobular cells?
- For those on hormone therapy, how are you managing the daily routine?
Thank you so much for reading. I'm grateful to have found a community that truly understands this specific diagnosis.
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I have been a high risk case since they found an ALH in my left breast in 2022. They removed it and put me on tamoxifen. I was put on an every six month screening regimen, with one mammogram and one breast MRI per year. I was a little late this past year and ended up having a mammogram in February, which was negative, only to have a breast MRI in May that revealed 7 mm ILC. There was no node involvement apparent on any of the imaging. However, after surgery, I had three positive nodes, a subsequent ALND that had three out of 10 notes positive. So total of 6! I’m now Stage 3A. Will start chemo in September followed by radiation, an aromatize inhibitor and then a CDK 4/6. My advice is don’t get to hung up on any diagnosis until you’ve had surgery. This is a very sneaky cancer as evidenced by my story! I’m 66, Er+ PR/Hers-. Tumor grade 1.
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Pokegranny,
Thank you so much for sharing your situation. I’ve been having annual 3D mammograms for the past five years, and all of them came back negative. I had some concerns about my right breast last year despite the negative mammogram, so I advocated for myself and asked for an additional ultrasound. Even with the ultrasound, I was told that everything looked fine and there was no cause for concern.
However, the discomfort in my right breast never really went away. Over the past few months, before this year’s annual mammogram, I started noticing more obvious tightness and heaviness in my upper right breast, including the armpit area.
I had this year’s annual mammogram in June, along with an ABUS, and was called back for a diagnostic mammogram because they saw some architectural distortion in my upper right breast. I then had a biopsy based on the findings from the diagnostic mammogram and ultrasound. They found two masses, each about 1 cm. My biopsy results say that both samples were negative for angiolymphatic invasion.
Because I’ve been experiencing tightness and discomfort around my armpit, and because I’ve read that ILC can be difficult to detect, I can’t help but worry about whether my lymph nodes could also be affected. I know I won’t know anything for sure until I have further testing.
I honestly didn’t expect anyone to respond to my post so quickly, so thank you again for sharing your experience. Just knowing that I’m not alone in this journey, and that someone else is going through a similar path, made the weight in my heart feel a little lighter.
I still don’t know what my treatment plan will look like or when I’ll be able to start treatment, but I’m taking things one step at a time. I’m praying for you as well, and I wish you the very best with your upcoming treatment.
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Hi lamsmom and everyone,
I’m also dealing with ILC. My hormone markers are the same: ER+, PR+, and HER2-.
I was diagnosed last month and recently had my first appointment with the specialist who will be overseeing my treatment. I’ll be having a PET-CT and some other tests soon.
It will still take a little time before my treatment plan is decided, so for now, I’m trying to keep my everyday life as normal as possible while I wait.
I’ve also been looking for information and learning as much as I can about lobular breast cancer.
I’d be very happy to connect with others here and share information and experiences. Thank you! ❤️
hellomomo748
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Hi lamsmom830,
I was diagnosed with ILC in my left breast after an abnormal routine mammogram on May 29, additional imaging and ultrasound on June 10, and a biopsy on June 23, which showed that the cancer was ER+, PR+, HER2-. The breast surgeon ordered an MRI when I saw her after the biopsy, but I couldn't get an appointment for about three weeks. The tumor was 1.4 cm.
I was initially scheduled for a lumpectomy on July 21, but had additional testing done before that, including the MRI, which showed two additional spots: one close to the original tumor deep in the breast, and the other was a tiny tumor close to the nipple, 5 cm away for the original spot. I then had an MRI-guided biopsy (not fun!) which showed that the tiny spot near the nipple was cancerous. With this information, a lumpectomy was no longer an option. My surgery was scheduled for August 10. The pathology report confirmed that the mastectomy was necessary since there were several other spots in addition to the three found by the MRI. which ranged in size from 1 to 3 mm. ILC is sneaky and sometimes hard to diagnose since it doesn't form a lump. I would certainly want to have an MRI in your case, I found the two months leading up to the surgery the most difficult because of the uncertainty and decisions that had to be made. Best of luck to you!
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and trying to figure out ILC is something so many here understand.
And @sjaantje, thanks for sharing your experience with MRI. ILC can be tricky on imaging, and it’s helpful to hear what others have been through, even though everyone’s situation is different.
Keep us posted, all of you. And hopefully some more of our ILC folks will jump in too. 💗
A couple of good resources as you’re learning more:
Breastcancer.org: Invasive Lobular Carcinoma (ILC)
Lobular Breast Cancer Alliance (LBCA) has lots of ILC-specific information, including FAQs, imaging, treatment, questions to ask your doctor, and metastatic ILC resources:
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