1. < Breast Cancer

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?

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dolphina3 | @dolphina3 | May 28, 2023
In reply to @ssmab "Thank you for all of the information on your treatment. You have been through a lot.❤️..." + (show)
@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
1 reply
ssmab | @ssmab | May 28, 2023
In reply to @dolphina3 "Watch Dr William Li on u tube he explains about intermittent fasting also I think her..." + (show)
@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
olivia7850 | @olivia7850 | May 23 11:15pm

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!

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