Hello Wyowyld:

Have you tried googling something like "invasive lobular carcinoma grade 1 risk of recurrence"? The articles and info that results from the search may be helpful.

I am metastatic ILC triple negative. I was first diagnosed as stage 3B despite regular mammos.

It's helpful to understand how ILC grows--by way of thin strands or webs that are difficult to image because they are so tiny.

Another reason is that in a PET-CT scan, the glucose based tracer (FDG) does not stick to ILC so it is not caught until the strands meet up and form a tumor. By then it's too late--there can a tumor all of a sudden.

Currently a new tracer called FAPi (Fibroblast Activation Protein inhibitor) is in third stage clinical trials at a few cancer centers (UCLA, UCSF and Mayo, maybe others) and the research results are very promising. As I understand it, the FAPi tracer sticks to the fibroblasts on the outside of cancer cells in difficult-to-image cancers such as ILC and others cancers.

There is a growing body of research on ILC. If you are hormone positive and/or HER2 positive you have many more treatment options should you choose that option.

However, the ASCO and NCCN treatment guidelines, the treatment 'bible' for oncologists, tends to treat ILC like other breast cancers. But ILC is not the same as other breast cancers as you will learn from medical journal articles.

My message is to educate yourself, read about ILC--not only from messages like these--but from medical journal articles, current articles since 2020. Yes, some articles contain chemistry and statistics--you can skip that if those matters are not your thing. Read the abstract (summary) and the conclusions section. Write down your questions for your doctor. Ask lots of questions. Consider obtaining a second opinion. Take control of your care. Be a self-advocate for whatever you decide. You hold the power of decision. Your body, your decision. You can do all of these things in a positive, open partnership with your oncologist.

Here's wishing you the very best!