@llthomson That is a tricky question and hope survivors will speak up, I went on Chat GPT. PLease note question and answers. And if I'm breaking a rule, I apologize. This is not an easy question. My experience with CHat on this is that they scans tons of medical journals and studies to come up with these answers. Hope this helps. I My question:
Does Lobular breast cancer have a high chance of recurring and spreading?
ChatGPT said:

Invasive lobular carcinoma (ILC) can recur and spread, but its pattern is a bit different from the more common invasive ductal carcinoma (IDC). Here’s the clearest, most up-to-date overview:

Is the chance of recurrence high?

Overall recurrence risk is similar to IDC when matched for stage and hormone-receptor status.

BUT ILC tends to have a higher risk of late recurrence (after 5–10 years).
This is partly because most ILC tumors are estrogen-receptor positive (ER+), which can recur later in life.

Does ILC spread more?

ILC does not necessarily spread more often, but it does tend to spread to different places than IDC.

Common metastatic sites for ILC include:

Gastrointestinal tract (stomach, colon)

Ovaries

Peritoneum

Bones

Other soft tissues
These areas are less common for IDC, which may make detection harder.

Key features of ILC recurrence risk

Slow-growing, which means it can come back later.

Often ER+/PR+, so endocrine therapy (like tamoxifen or aromatase inhibitors) reduces recurrence risk significantly.

Margins can be harder to visualize on imaging, which can lead to slightly higher local recurrence if disease isn’t fully removed.

What reduces recurrence risk?

Completing recommended surgery, radiation, and systemic therapy (endocrine therapy, +/- chemo depending on the tumor).

Staying with endocrine therapy for 5–10 years can significantly cut recurrence risk, especially for lobular cancers.

If you want, I can also explain:

Typical prognosis for ILC

How ILC behaves differently biologically

Signs/symptoms to monitor

Long-term follow-up recommendations