Lobular Stage IV Imaging Issues - I Know I’m Not Alone

Thanks for starting this group.

I was diagnosed July 2019 with extensive mets to the bones. I had a mass near my left chest wall that they were able to biopsy and found it was ILC. (ER/PR+ HER2-) I’m not convinced imaging is showing the mILC because my tumor markers (which are pretty reliable) have jumped significantly but nothing has changed on bone or CT scan. I’m on Faslodex so no FES for me right now.

I’m hoping to learn from others and become an even stronger self-advocate with what I learn here.

kbl, I have been on Zometa for 2 years

Hi @kbl and @cyathea I am new to this thread, but not to BCO. I have dealt with breast cancer for 21 years. My second diagnosis was with ILC in Dec, 2019. I am on Letrozole again after my third dx (IDC) in Aug of 22, but that is not what concerns either my MO or me, it is the ILC!

I had both breasts removed (not at same time as I wanted) and I am on the Letrozole. Nothing but reconstructed breast examinations. No scans, no blood tests, other than my routine tests from my cardiologist. No tumor marker tests. My tumor was just shy of 2 cm, so not huge.

I had a bone scan done last summer due to bone pain, which I still have. It didn't show anything.

I hate the feeling of waiting for symptoms to show up. I try not to worry about it, but after being blindsided by cancer three times, I can't help myself.

I never had a PET scan. I should say I was treated by three different teams of doctors at two different hospitals.

My Onco testing was 23 for the ILC but I wasn't given chemo due to being over 50. I can't help but wonder if I am alone feeling that if I stop worrying about ILC showing up again, it will.

Thanks for letting me vent!

ILC recurrence showed up in CT scan. Bladder/ureter, etc. Then MRI revealed more, and PET scan too. Right now I am getting my 3 month scans done next week, but insurance won't pay for a repeat PET because, quote, there is no bone involvement, so I will have a bone and CT scan. I'm told that an FES-PET is the gold standard for finding/confirming ILC but my MO wouldn't order one for the dx and I doubt BCBS will pay for it since they wouldn't pay for a standard PET.

kbl, yes, I did have the blood test as you mentioned and I do have mutations, which the lab told me means that I have options if current tx doesn’t work. Whatever options those are, I’d like not to know for awhile because I am hoping femara and verzenio are going to work for a long time.

My mom had 3 PET where nothing lit and 2 CT scans. First PET was NED. Subsequent PET did not light up but showed bowel wall thickening, mild acites, and hydronephrosis. So imaging didn’t help. Her diagnosis was found through colonoscopy and pathologist report says it is adenocarcinoma with breast origin since it is ER/PR+, HER2-.

@kbl how was your mutation determined? What tests can we ask for to determine mutations?

Wishing you all successful treatments for a very very long time.

It’s unclear at the moment how much my ILC shows or not on imaging. Nobody agrees. The original tumor was missed even though I was having routine breast MRI, but not because it was not showing. I saw it myself (after the fact) while it was still small. It was just ignored as being part of my fibrocystic breast. I actually found the lump, two years later, and on the MRI ordered then it was huge and unmistakeable.

Since then, I’ve had several clear FDG PET, U/S, Xray and CT. I’ve also complained more than once about two spots on my spine that occasionally felt bruised when I would lean back on a chair, and they would bang on my back and say if that doesn’t hurt it’s fine. (That even happened two days before I was told I was metastatic IN my spine.) No follow up on MRI ever.

Six months ago, routine CT showed something on the vert, but that was also written off as “just arthritis” even after I asked how do we know it’s not cancer. Sometime between then and now, T6 fractured unbeknownst to me. Another routine CT this past April showed the fracture, and a slightly shadow of some sort on the vert indicating it was not arthritis. Follow up MRI, to my shock, unequivocally stated it was in almost every vertebrae (though I just found out yesterday they didn’t actually mri the whole spine so there might be more). But FDG PET one week after MRI shows only four spots, all bone. One MO says PET is significantly underestimating the amount of cancer (apparently is believing the MRI) but refuses to order FES as it “will not really add much.”

I am to have a bone scan next week to “see if that’s a better way to follow my Mets.” I have repeatedly asked how we can know it’s bone only (if the PET is erroneously seeing only four out of a billion places in the spine, how do we know it’s not also missing things in the organs), but basically they say it’s unimportant as it won’t change treatment. I was told that the good news is that we CAN see some of my Mets (because in some people nothing ever shows), and so we can follow those that we can see, and assume that if treatment is working there, it’s working wherever else there might be Mets. I pointed out that knowing there’s only four as opposed to a billion (if PEt were right) would matter as it would make me oligometastatic and we could zap them with curative intent and then maybe play whack-a-mole after, to give me more time.

To confuse me even more, it was also mentioned that the problem is going to be that I can’t go by pain as an indicator if treatment is working because one of the two drugs I’ll be taking has a slight analgesic effect that could mask any pain (and I don’t have a whole lot anyway), AND because it’s going to be hard to figure out what is Mets pain and what is osteoarthritis in my spine which I do have. So is the doctor who tells me the PET is right, and a lot of the other stuff on MRI is actually arthritic inflammation correct? Or the doctor who tells me the PET sucks for ILC and my spine is actually riddled with cancer? Who/what do I trust. Leave it to me to not only get cancer, but to get a cancer that imaging can’t even see so we have no idea how much is there.

Edited to Add: And let me just say to any doctor reading this now or in the future…… to refuse an imaging option like FES that would show ILC, and to basically shrug and say “it doesn’t really matter” is just cold and a little bit heartless in my opinion. I am more than my treatment. More than my cancer. Knowing what my body is doing so I even FEEL more in control in this horrible horrible disease, or at least know what’s there or not, that counts. That matters. A Lot.

KBL the biopsy is a good idea. Unfortunately, this new MO doesn’t strike me as the type to be open to suggestions. I may be wrong as I’ve only had one appointment, but that’s how it appears. I’m trying to get in with MDA. I just don’t know how long that will take or if it’s too long to wait or if I go ahead with what they want me to do or what. It’s so confusing. I made the wrong choice on who to believe 4 years ago, apparently, I’ve now found out and I don’t want to do that again.

Thank you @kbl. I'll ask the onco if we can test for mutations. My mom has been on anastrozole since completing chemo/radiation years ago. Wondering if that caused any mutations.