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

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

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

eaglewings22 | @eaglewings22 | Oct 14, 2023

Dr Jason Mouabbi at MD Anderson -Houston is an ILC specialist & is excellent.

jaf123 | @jaf123 | Oct 14, 2023

In reply to @hollyng "Mayo in Rochester has lobular oncologist. Prayers for you. I too have ILC and am treated..." + (show)

Many thanks! Wishing you well 😁

jaf123 | @jaf123 | Oct 14, 2023

In reply to @deb23 "ILC here. I'm going in for second set of follow up imaging 11/10, CT of chest,..." + (show)

I get the same scans as you 4x a year. My doctor watches the typical CEA and cancer tumor 27-29. I just saw her this week and she explained what she has said in the past… they are not a reliable indicator of disease. The scans are stable as is the way I feel. I’m still interested in a lobular specialist in my area though. Wishing you the best.

deb23 | @deb23 | Oct 14, 2023

In reply to @jaf123 "I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been..." + (show)

ILC here. I'm going in for second set of follow up imaging 11/10, CT of chest, abdomen, pelvis, plus bone scan. I'm wondering what specific markers are checked and watched for you? Markers have not been mentioned for me, and I think that is an important point to bring up at my next appt.
Good luck to you, and all of us.

hollyng | @hollyng | Oct 14, 2023

In reply to @hollyng "Hi: I am scheduled for the Fast Forward Fractional Radiation also. 5 days. I am hesitate..." + (show)

I qualify for the 5 day also. I go to Mayo Fl.
It will be in a prone position. Can you please share your experience?
Thank you.

hollyng | @hollyng | Oct 14, 2023

In reply to @jaf123 "I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been..." + (show)

Mayo in Rochester has lobular oncologist.
Prayers for you. I too have ILC and am treated at Mayo in Fl.

hollyng | @hollyng | Oct 13, 2023

In reply to @joiful "In May 2021, I was diagnosed with invasive lobular carcinoma (ILC) in my left breast and..." + (show)

Hi: I am scheduled for the Fast Forward Fractional Radiation also. 5 days. I am hesitate and waiting on the onco score. Can you tell me about your experience with the 5 day. Were you in a prone position? Thanks so much,

hollyng | @hollyng | Oct 13, 2023

In reply to @jmh22 "Lobular makes up about 15% of breast cancers. The LBCA (Lobular Breast Cancer Alliance) is working..." + (show)

I look forward to hearing about the International ILS Symposium. Thank you so much.

jaf123 | @jaf123 | Oct 11, 2023

I was diagnosed with metastatic lobular BC which made its way to my gut. I’ve been on Ibrance and fulvestrant for 18 months and scans are stable…last set 9/12 CT chest, abdomen and pelvis. My markers are gradually increasing for the last 5 months but I’m still in a range that doesn’t set an alarm. I feel no different either. Yet I can’t help but think that the CT scans could be missing something. Suggestions welcomed. I live in NJ, oncologist is in NYC, but I’m considering going to a lobular specialist. Can anyone recommend one please? Thanks in advance…wishing you all the best!