Triple negative invasive lobular breast cancer

Posted by jknows @jknows, May 25, 2023

I have been diagnosed with triple negative invasive lobular breast cancer. I understand most lobular breast cancer is hormone positive. As a result, I am being treated according to a triple negative ductal breast cancer protocol. I am interested to know if anyone has found a unique program that addresses both the lobular aspect and the triple negative aspect of my breast cancer? Is it something they do at Mayo?

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

Profile picture for ssmab @ssmab

Thank you for all of the information on your treatment. You have been through a lot.❤️ The intermittent fasting, even if the jury is still out on that, is something that makes us feel we have some control over the situation, so I find that very helpful. Sending good health wishes to all. ❤️

Jump to this post

Watch Dr William Li on u tube he explains about intermittent fasting also I think her name is Monica TNB survivor on u tube and her clinic mentioned fasting 14 hours.
I think in the future they will find out how it does help . Since they don't know what causes TNBC it's worth a try.
Good luck to all.

REPLY
Profile picture for dolphina3 @dolphina3

Watch Dr William Li on u tube he explains about intermittent fasting also I think her name is Monica TNB survivor on u tube and her clinic mentioned fasting 14 hours.
I think in the future they will find out how it does help . Since they don't know what causes TNBC it's worth a try.
Good luck to all.

Jump to this post

Thank you so much! I will definitely watch those videos!

REPLY

Has anyone with invasive lobular carcinoma triple negative had a FAPi PET scan?
FAPi (Fibroblast Activation Protein inhibitor) is a type of PET scan tracer used instead the the common FDG (glucose-based) tracer.
Triple negative ILC does not image well--or at all--with the usual FDG glucose-type tracer. There are other types of cancer that do not image well with the current FDG glucose tracer.
Fibroblasts surround cancer cells and so the FAPi tracer can identify the cancer via the fibroblasts and thus the cancer to an extent that the FDG tracer does not.
There are a few other tracers available, for example, the tracer used for estrogen receptor positive cancers. But that doesn't help triple negative victims.
FAPi is in clinical trials at Mayo, UCLA and a few other places. However, those trials are not currently accepting breast cancer patients.
I am ILC triple negative, mets to lungs and retroperitoneum.
If you have had a FAPi PET scan, could you please share your experience? Thank you so much!

REPLY

Hello jknows:
I also have triple negative invasive lobular carcinoma, diagnosed May 2022, metastatic as of April 2024, mets to lungs, lymphatic system, retroperitoneum and contralateral breast.
Research articles suggest that due to the difficulty of imaging ILC , it has usually spread farther than any PET, CT, mammo or clinical exam will show.
Some research also suggests that neo-adjuvant chemotherapy is not helpful in ILC, i.e. the chemo will not yield anything close to the goal of pCR, or pathological complete response. That was true in my case, no pCR or even close with neo-adjuvant chemo.
The few medical journal articles I have researched suggest that one approach is to skip the usual neo-adjuvant chemo and go directly to sacituzumab govitecan, known as Trodelvy. It is typically used as a third line chemo. I am on Trodelvy and it is the only chemo that has had an effect on reducing/controlling the cancer. Of course the issue will be insurance covering Trodelvy at the neo-adjuvant stage. But I imagine it's no more expensive than the usual neo-adjuvant chemotherapies.
It looks like I can't enter the link to the article...here's the article title that you can use to search: Sacituzumab Govitecan Helps Some Patients With PD-L1-Positive Triple-Negative Breast Cancer Live Longer Without Cancer Progression. May 31, 2025
It appears that there is little research in this area, as there are very, very few cases of ILC triple negative.

An additional option is a FAPi PET scan to get an accurate picture of cancer status. FAPi (Fibroblast Activation Protein inhibitor) is a PET scan tracer that attaches to the fibroblasts on the ILC cancer cells. A FAPi PET scan will show your cancer more accurately than the usual PET scan using the FDG glucose based tracer. ILC and some other cancers do not show up on the common PET scan using the FDG glucose based tracer. In ILC, the glucose tracer does not adhere to the cancer cells, thus the scan result is, well, lousy! There are a few FAPi clinical trials available. You can find the FAPi trials and a great deal of positive research regarding FAPi online.
Here's wishing you the very best!

REPLY
Please sign in or register to post a reply.