Just diagnosed with invasive lobular carcinoma (ILC): Any advice?

Hi! Sending hugs-I was diagnosed a year ago and felt very lucky to have had a radiologist pick it up in a screening mammo. After a diagnostic mammo and biopsy via ultrasound I had an MRI which is recommended with lobular and especially if you have breast dense breast which I still have at 57yrs. The surgeon will walk you thru options and I decided on a lumpectomy! Please keep us posted and don’t get too ahead of yourself until you have a plan. Once your cancer is studied in pathology you will learn so much more which will dictate your treatment. Lobular is they say tricky as the cancer cells form more if a line vs cluster/tumor in the more common ductal. Perhaps you have a cancer center near you? Hang in! Xo

Any info or advise would be appreciated!

How did your appt go with your surgeon? My ILC (just under 2cm) was partially picked up on a mammo and more completely presented on an MRI I had pre surgery. I'm happy your lobular was also found on mammo. I have very dense breasts and worry I should be getting MRI's but so far - one year out and I have one diagnostic mammo last week which was unremarkable. Keep us posted. I am 58 yrs old and treated at Dana Farber, Boston. xoxo

@mgimenez, I can understand the apprehension about starting treatment. Have you started chemo now?

I know that the last post in this conversation was in January but I'd like to keep this going if posible. In June 2021, I was diagnosed with ILC stage 2B (because of the size of my cancer) 6+ centimeters. I am hormone negative and HER2 positive. I had a course of Paclitaxel with Herceptin and Perjeta (two targeting drugs). That was followed by a mastectomy and 19 rounds of radiation because the chemo did not wipe out all of the cancer. Another round of cancer, this time 14 sessions of Kadcyla finishing in Aug 2022. I had reconstruction in April 2023. My oncologist has been watching several small spots on my lungs that haven't change from the first MRI (can be old scarring from pneumonia). I have met only one woman with a similar diagnosis as mine. How are you managing your treatment? survivorship?

Hello Mrsth,
I had stage one lumpectomy 12 years ago. I knew what it was caused by. I had been hit in the chest years before witch caused the lump practically on my sternum. But I went through the process of radiation and taking Tamoxifen for five years. I did it because I wanted to have no doubt whatsoever. Nowadays Breast lumps and other issues ( I don't use the C word) have come a long way. So many strides have been made and so many issues now get resolved. Have confidence in your physician, that your issue will be totally resolved and that you will do well.
There's book I read when I was going through Chemo last year for something else. "The Dynamic laws of Healing" by Catherine Ponder. It's excellent information and I recommend it highly.
Joyce

Thank you everyone for your comments/support and knowledge. I have been diagnosed with ILC, classic type, grade 2. ER+ PR+ HER- and I actually have a lump which I know is unusually for ILC. I have my first appointment with the breast surgeon on Friday which as you all know will start to bring some kind of relief and hopefully a plan. Thank you once again.

Hi,
I am new to the site and newly diagnosed with ILC. I detected it back in April and after waiting for a diagnostic mammogram for 3 months and many tests and biopsies I will start chemo next Tuesday. I met with a surgeon which agreed that chemo should be given first due to the size of tumor. Then I will have my surgery. You will get a lot of information when a biopsy is done. I am hoping I can tolerate the chemo that is my biggest fear. I will start AC Adriamycin and cytoxan then followed by taxol. Lots of positive vibes to all of you many good wishes and prayers. We can do this!!

@mrsth, deep breath. You're not alone.
I moved your message to this discussion that @francinemoran started just a few months ago that sounds very similar to your feelings.
- Just diagnosed with invasive lobular carcinoma (ILC): Any advice?
https://connect.mayoclinic.org/discussion/invasive-lobular-carcinoma/
Click the link to see the helpful tips she got from fellow members.

Have you consulted with your cancer team about next steps and a treatment plan? How are you doing today?

I always take a few Tylenol before my mammograms.