Very weird - Imaging and biopsies

KBL

I was diagnosed in May with Stage IV de novo breast cancer to my GI tract after two different endoscopies showed cancer in two places in my stomach from the biopsies. They did two endoscopies to be sure, and I've had a second opinion on the pathology. All imaging, including PET/CT, mammogram, ultrasound, breast MRI, and just last Friday a CT scan of neck, chest, pelvis, and abdomen, do not show disease. I've been on Ibrance and Letrozole since June. I'm just curious if anyone here has had cancer in biopsies that have not shown in imaging from the start. It's very confusing to me.

EV11

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

KBL

EV11, you have no idea what you’ve just done for me. The first thing my doctor said is it’s lobular, so I knew that, but the fact it’s not showing on scans was very frustrating. You have put it all in perspective and let me know I’m not alone. I’m so sorry they’re finding more with you. Itseems that the only way we will know about progression is through biopsies and things like colonoscopy. So strange. I will definitely write you if I have any other questions. I hope the different medication can continue to keep yours at bay for a long time to come. I don’t feel like I’m going nuts any longer. No one has explained it like you have. Thank you from the bottom of my heart. I have logged in to the alliance website and will have to look at all the information. I appreciate you so much.

KBL

So just for the heck of it, I went to look up Social Security Disability last night. I am not at the point where I have to stop working, but if I ever get there, I wanted to be informed first.

The documentation needed looks like the usual proof from the doctor, pathology reports, AND scans and image proof for Stage IV.

I'm curious how that would affect those of us with scans that don't show anything from the start.

KBL

EV11, I wrote you a private chat, but I’m not sure you got it. I will leave it here.

Hi, Elizabeth!

I just wanted to thank you again for answering my question with so much information. I would like to know the different ways you're monitored other than scans.

I'm thinking at this point, the only thing we can do is monitor my blood work and my tumor markers. They are quite high, one being in the 400s, one now down to the 180s. They've both come down just a tad since I started the meds.

If you know of any other ways, I'd love to hear about them. I appreciate it so much.