Triple negative invasive lobular breast cancer

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!

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!

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

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.

Thank you very much. I have my appointment with my endocrinologist this week and I will tell her that I want to change to Zometa. You think she would know that information…

No, it is the same type of drug but all I know is that the Zometa version is given to people who have had a cancer diagnosis and Reclast is given to those with osteoporosis who have not had the cancer diagnosis. Zometa must have an extra component that helps us.

Did your oncologist say anything about Reclast instead of Zometa?

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. ❤️

I am glad you are doing well. I had Triple Negative lobular 2A no lymph nodes involved but large tumor. They gave me fec chemo and then taxol. Then masectomy and 5 weeks radiation. After that xeloda for 9 months and I also have Zomeda every 6 months for 3 years.
I also fast between 14 and 16 hours almost every day. I also walk at least 150 minutes a week they say this helps recurrence as well. I eat vegs, lots of fruits, and drink green tea. Hopefully this will help maintain remission. Good luck to everyone on this journey and best wishes.

You are being treated at a great place so that is good. My only real treatment besides the double mastectomy for the Invasive Lobular is the Zometa infusion that is also an osteoporosis drug. Since it turns out that women who have had breast cancer and and have been on Zometa for osteoporosis have a higher 10 year survival rate than women who have had bc and didn’t take Zometa, then that drug is used to help prevent against recurrence. I’m not sure if you don’t have any osteoporosis at all if they could use that for you. You could certainly ask your oncologist at MD Anderson.

Because I had a double mastectomy ( since I had a different type of cancer in each breast and I also had LCIS, which is a marker for breast cancer, a double mastectomy was the best thing for me to do) and my margins and lymph nodes were clear, and the lobular was stage 1a the Oncologist didn’t think chemo would do anything. Was your triple negative lobular in the lymph nodes? If there is node involvement or it has gone further then they try chemo.

I am eating a lot of vegetables and fruit , especially broccoli which I have read is an anti cancer vegetable. I have been limiting sweets which I have read can help and I have been doing a 30 minute brisk walk almost every day. Those are other ways we can help ourselves. I also do the optimistic self talk every day for 15 minutes. I do believe our thoughts have a great impact on our health. I say “ I am going to stay in remission, I am going to stay cancer free, I am a survivor and I will remain a survivor. I will be just fine.” I repeat that over and over for 15 minutes. Every single day. And I pray a lot!

I have recently read that doing “intermittent fasting” of 13 hours a night ( that’s finishing dinner say by 7pm and not eating any food for breakfast till 13 hours later or in this case, 8 am (or however you want to have the 13 hour fast work for you) may help to prevent breast cancer recurrence. I am going to ask the oncologist at my next Mayo appt in July if there is any validity to this intermittent fasting of 13 hours in preventing recurrence. Till I see him I am doing it. I have been doing it since I read about it 3 weeks ago, and since it doesn’t hurt us, I figure why not do it. It has been very easy to stick to it and I feel it may help me. So why not? You could ask about it at MD Anderson and see what they say.

I know it’s scary having lobular that is triple negative but I have decided that I can do my very best to stay as healthy and optimistic as I can and I feel that will really help me. Keep believing that you will be a survivor. We can be and we will be.❤️