Anyone with invasive lobular cancer stage 4 that has metastasized?

Posted by michaele74 @michaele74, May 7, 2023

I had invasive lobular cancer in March 2009. Had a lumpectomy and took aromasin for 5 years. I was told I was clear. It came back and was detected and finally diagonosed in 7/2022. It is stage 4 and crossed from 5"oclock right breast to left lymph nodes. I took Ibrance and anastrozole until 2/6/23. Had double mastectomy and 23/31 left lymph nodes were positive for cancer. New FES PET scan indicated activity in my bones. Has any doctor or patient experienced anything like this?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Chris, Volunteer Mentor | @auntieoakley | Jun 7, 2023

In reply to @lindahco "I was recently diagnosed with metastatic lobular carcinoma just had a second surgery. They removed 14..." + (show)

Geez, this is awful @lindahco how are you doing with the news?

Colleen Young, Connect Director | @colleenyoung | Jun 7, 2023

In reply to @lindahco "I was recently diagnosed with metastatic lobular carcinoma just had a second surgery. They removed 14..." + (show)

Hi @lindahco, I add my welcome. I moved your post to this existing discussion:
- Anyone with invasive lobular cancer stage 4 that has metastasized? https://connect.mayoclinic.org/discussion/anyone-with-invasive-lobular-cancer-stage-4-metastasized-to-the-bone/

I did this so you can read previous posts and connect with others like @michaele74 @meme5 @eku @jmh22 @mjwhearts22, who have metastatic lobular breast cancer.

You're not alone. I'm sure you have loads of questions. Fire away. I'll start with one. What further testing will you be having?

lindahco | @lindahco | Jun 7, 2023

I’ve had a ctscan, bone scan, genetic testing is in progress. They rushed the breast. All came back negative. My ER and PR were positive and HER2 Negative. Not entirely sure what that means but told those were good markers. I go in for my post op on Friday. How soon do they usually start treatment? Chemo?

eku | @eku | Jun 8, 2023

In reply to @lindahco "I’ve had a ctscan, bone scan, genetic testing is in progress. They rushed the breast. All..." + (show)

Hello @lindahco ,
I got the diagnosis of ER/PR+, HER2- stage4 BC (lobular) in January 2022. I have mets to bones. I had a CT scan of chest, abdomen, pelvis (CT cap) and bone scan (bone scintigraphy). They started treatment a month later since I was pre-menopausal. They put me on an ovarian suppressor called Zoladex. It's a monthly shot that inserts a rice grain sized implant to your abdomen. The following month I started Abemaciclib (a CDK 4/6 inhibitor), anastrazole (an aromatase inhibitor (it stops production of estrogen) and Zometa (an infusion to help bones). First two are pills to take every day. Zometa is a monthly infusion and Zoladex is a monthly shot. I took Zometa monthly during the first year, and in year two it is every third month.

The first 2-3 months is adapting to these meds so it may be a bit difficult. Zometa was tough the first few times. I had some diarrhea with Abema but then it went away. Some hot flashes (menopause like symptoms with anastrozole) but quite tolerable. Some hair loss/thinning. Some fatigue. My memory is not as sharp as it used to be. Loss of desire for intimacy. Depends on your particular situation but chemo was not offered to me, nor a mastectomy.

To support the treatment, I started daily walks (as much as I can). I shifted to a mostly plant based diet. Sleep is important, so is mental health. Try to go easy on yourself and if anyone offers to help with anything, accept 🙂 🙂 🙂

Lots of love and prayers to you.

lindahco | @lindahco | Jun 8, 2023

Thank you @eku for sharing this. Your treatment sounds tolerable. My surgeon felt a mastectomy wasn’t needed due to my numbers. Chemo may be an option now considering how many lymph nodes are cancerous. I wish you all the best on this journey. I hope they have given you hope for a long life after treatment.