Very weird - Imaging and biopsies

Hello, KBL...

Unfortunately your story is a common one for patients with metastatic lobular breast cancer. It's challenging for us, since the way ILC mets grow-- in single-file strands that eventually merge to form thin net or web-like structures--makes them difficult for any of the currently available imaging modalities to detect. It is not until the metastasis becomes very advanced and a large number of strands coalesce that there is a dense enough tumor to be detected. It's also complicated by the fact that ILC makes up only about 12-15% of the breast cancers, so many oncologists don't treat enough of us to get a good sense of the unusual places that it metastasizes to...while it is far more likely to seed the abdominal cavity, reproductive organs and GI/GU tract than ductal MBC, the relatively low numbers of patients with ILC AND abdominal mets that any one oncologist will care for is small, so the odds of their knowing what to look for and how to detect it is not in our favor.

I was diagnosed de novo stage 4 at age 52 in May 2015 despite a decade of "clean" annual mammograms. At the time I was diagnosed, imaging (PET, CT and MRIs, including breast MRI and mammograms) only detected extensive bone mets, so my onc and I were thinking I had bone-only disease. I had surgery to remove my ovaries 3 months after my diagnosis b/c I was to menopausal and I failed chemical ovarian suppression. My onc and surgeon were shocked when my ovaries and Fallopian tubes came back with positive ILC mets on pathology, and the surgeon reported seeing hundreds of small lesions covering every organ in my abdomen as well as on my omentum and lining the peritoneal cavity-- biopsies of my peritoneum were also positive for ILC mets. NONE of that was visible on the scans, even after the radiologist re-read them knowing what the surgeon found.

Three years into my diagnosis I had a routine screening colonoscopy that found about a dozen small ILC lesions inside my colon (I get one every 5 years for a strong family history of colon cancer...). Nothing showed on an abdominal MRI or CT scan at that time....I have only had a large lesion show on the upper outer surface of my bladder during a CT scan this past April, 4 years after my original diagnosis. So it has taken about 4 years for it to become detectable on imaging.

If you have not visited the Lobular Breast Cancer Alliance's website, you might want to. It has a lot of information about lobular BC, including articles about the unusual presentations of ILC (both early and metastatic).

I was on Ibrance and letrozole as my first line treatment. It did a good job of keeping my cancer at bay for 42 cycles (slightly longer than three years.). I hope that you have an equally good --or even better-- response. It can be very frustrating to have to deal with the uncertainties of following the progression or treatment response of ILC, so feel free to contact me if you ever want to talk about some of the less common ways my onc and I try to keep a sense of what's going on in the absence of having reliable scan results.

Take care, and let us know if you figure out any effective ways to monitor or treat your abdominal mets.

Elizabeth