“Stable” bone mets? Or...?

NancyHB · December 2017

Is it possible to have stable bone mets that show minimal or no progression, without treatment, for extended periods of time? I was dx’d Stage IV with bone mets to two ribs earlier this year via correlated bone and CT scans. In the process I switched oncology practices (long story) and am now working with a MO who specializes in MBC. My former MO wanted to start chemo and/or rads immediately but the tumor board requested a rib resection first (expectation is that mets are from recent TN recurrence and not original ER+, so no mention of Tamoxifen or AI). My second opinion (current MO) said no need, correlated scans are enough for them, and the rib resection has its own set of dangers. Okay. She says treatment is palliative and as long as I feel good she doesn’t want to subject me to chemo and/or rads. Again - I’m fine with that, I feel good so why feel lousy again? (I’d just finished chemo in June and was just starting to feel better). She recommends quarterly bone and CT scans to look for progression.

First scan she dismisses the second bone met as a rib fracture, but says correlated scans still show met on first rib, no significant progression.

Second scan - stable rib met but now a spot on sternum (very close to my original tumors), still says stable.

Third scan - correlated both rib and sternum as mets, MO talks with both radiologists who agree. She continues to tell me SIV but stable for now.

Then she talks with another radiologist who dismisses rib met as a fracture and sternum lesion as chostrocondroitis. MO tells me that even though scans correlate and other radiologists agree these are mets, she now feels there is no cancer. (WHAT?!). Wants a rescan in four months.

Fourth scan this last Monday. Both areas are picked up on both bone and CT scan, both reports indicate mets, but stable since last scan. MO emails, “no evidence of mets but we’ll talk on a couple of weeks.”

Up until this moment I’ve been living with “stable” bone mets. I feel totally confused and think I need to ask for a biopsy to put this back-and-forth to rest once and for all. I hate the idea of surgery but am getting such conflicting messages I need answers. Am I being unreasonable? My MO doesn’t seem to understand why I’m not jumping for joy because “you don’t have cancer” but that’s not the message I continue to get from my scans.

WHAT am I missing?!

pajim · December 2017

Nancy, this sounds like a lovely anxiety-provoking set of experiences. You've learned two things: (1) reading a scan is an art not a science and (2) radiologists don't always agree.

When I went from NED to something, for a year that something kept changing. One scan spot on x. Next scan, no spot on x but spot on y. In the end my onc and I decided to ignore all this until there were spots on x, y AND z. Stay the course.

I have three possible suggestions for you.

One is to ask for a PET scan. That finds fast growing cells and would rule out a fracture.

Second is to take your scans and get a second opinion at one of the major cancer centers.

Third is to stay the course and try not to worry. Presumably you're taking tamoixfen or an AI anyway? Or are you not? If you're not on any treatment at all and the scans basically look the same after a year, then if those spots are mets the cancer sure as heck isn't growing. And if it's triple negative, that would be remarkable.

If you're dying to rule out cancer that's one thing. Would you worry less if you knew these weren't mets? Or would you still want a scan every few months?

NancyHB · December 2017

pajim, thanks for the response. I appreciate your insight and suggestions. I think i’m less anxious and more frustrated than anything else. I learned a couple of years ago that reading scans is both an art and a science, and while not everyone will always agree there’s often at least an acknowledgement of possibilities. I have reports from five different radiologists who all seem to agree, so it’s hard not to trust their expertise.

My new MO is with a major cancer center, which is why I sought her as a second opinion in the first place 😊. I don’t think there’s any value in a third opinion on scans at this point - too much art without the science behind it. I think I feel a little like Schrodinger’s cat - I both have mets and don’t have mets, but until I open the box and have that biopsy, I won’t know definitively. And having had both ER+ and TN cancers, I don’t know which (if either) of these is the culprit. And you’re right - if it’s TN then stability this li g would seem to be incredible....but I don’t know what I don’t know...

In the end it’s not about worrying more or less - it’s knowing one way or the other. I lost my opportunity to renew my life insurance recently because i have a “terminal” diagnosis (their words, not mine). And it feels disingenuous to say, “I have MBC......maybe??” It’s hard to have my MO so adamant all these months, only to have her change her mind.

JFL · December 2017

Honestly, I would be cautious about supposed rib fracture-only and costochondroitis diagnoses. Bone mets cause fractures and sternum mets very much mimic costochondroitis (I mistakenly believed I had that when I first started feeling bone pain and mistakenly believed I had other ridiculous things the doctors told me was causing my pain - my diagnosis was delayed and between the time my bones first started hurting and the time I was diagnosed 6 or so months later, nearly all of my bones were filled with mets, I developed two 2-cm palpable supraclavical lymph nodes and the BC spread to my liver. Unfortunately, mets don't go away (barring an occasional miracle) although they do go inactive for ranging periods of time, with or without treatment. Your idea of a biopsy sounds like a good one. In the event you do have bone mets that are triple negative, I thought rads wasn't too harsh and was a good way to spot treat problematic bone mets? Or could you do a low-dose maintenance therapy like super low dose Xeloda pills or other oral chemo (Cytoxan or Navelbine) or one of these new immunotherapies? I think your instincts that something isn't adding up in all of these various diagnoses and recommendations. No treatment sounds like an odd recommendation, given your history of mets.

NancyHB · January 2018

I wanted to update my post after my recent MO visit. We met with both her and her new fellow, and had a long, in-depth and educational conversation. Long story short - she doesn't believe what's appearing on my scans isn't cancer, rather she believes it's not active cancer. Even after consulting with a musculoskeletal specialist, who offered the potential differential dx of chostrocondroitis, she still believes very strongly the lesions are (or were) cancerous. When I asked what exactly "were" meant, she said it's possible they were there and undiscovered prior to my last diagnosis, and halted with chemo; it's also possible they were attacked by my immune system. She doesn't have an absolute answer, but has theories, and I'm okay with that. As always she reminds me we can't know 100% it's cancer unless and until she can "stick a needle into it" but she again said she's 99% certain it is.

So we stick with "it is" and leave it at that.

I'll be having CT and bone scans every quarter for another year. If there are no changes at all in that time period, I'll move out to every four months for a year, then every six months for the next year. We'll re-evaluate after that.

My DH and I picked up a significant change in size in the mediastinal/peritracheal lymph node. Was 9 x 14 mm on the CT 3 months ago, now 13 x 18 mm. And a previous lesion in my lung is larger than last time, but still subcentimeter. We'll re-evaluate both after the next scan.

For now, I enjoy the next two months and try not to worry or fret until I have something more to worry or fret about. Thank you all for your suggestions.

pajim · January 2018

It sounds like you feel much better, even if this isn't entirely settled and you have to wait and see.

That's excellent. I hope the scans continue unchanged.

“Stable” bone mets? Or...?

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