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

Gather tips from others and keep reading and looking up the vocabulary so you understand everything. I took my daughter and husband with me to my first post-diagnosis appointment and my daughter wrote down notes along with me. She caught things I had missed! We went home and combined and rewrote our notes. Next time I took a small recorder and asked whether I could tape record our consult. It really helped to gather all the facts presented. When the shock wears off I hope you'll feel empowered as I did by learning as much as you can on your own. This is new for us, even though our doctors rattle off facts, numbers, procedures with swift ease. I felt very confident because I tried to gather information from reputable medical sources like Mayo Clinic. You came to the right place! Hugs for strength!

How is the first mamo after lumpectomy??? Painful?

I love that I found this message board to help all of us discuss & manage our journeys. I am 70 years old and was on HRT for 20 years & was diagnosed in March with Invasive Ductal Carcinoma Grade 1, HER/PR +, HER2 neg, tubular. It was found at a reg yearly mamo & had a biopsy & then lumpectomy with clear margins followed by 5 radiation treatments. My oncologist wants me on tamoxifen but I so far declined due to the side effects I have watched my friends endure & I was told mine is slow growing. I have my first mammogram this Wed. & my breast is still sore with a knotty feel above the nipple. Is this going to be painful?
Thx a million in advance for any words of wisdom.

I always take a few Tylenol before my mammograms.

@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?

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!!

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.

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

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?

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

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