Had BMX with TEs now MO now concerned about mets....

9lives - so sorry to hear of your rising tumor markers. I find it interesting, too, if they were eleveated prior to surgery, that your MO wasn't more concerned. Maybe he thought it was a fluke at first and wanted to watch them for a while? Regardless, I hope your upcoming tests continue to show benign or no findings, and you can go forward comfortably with your exchange surgery.

I would imagine surgery would take a back seat to necessary treatment, should you find yourself with a Stage IV dx. I had unilatereral Stage I DIEP flap last summer, and planned Stage 2 for after the holidays. My MO asked me to put it off for a couple of months while we watched two spots on my spine for mets; ultimately mets were found on my ribs. I saw my PS a week after my dx and he is not comfortable doing any surgery at this moment, until I know there isn't chemo or radiation in my near future. Honestly, I'm all good with that; I had surgery a month after completing chemo this summer and ended up with a nasty superbug that put me back in the hospital twice. My body needed more time to heal and be fully prepared for surgery, and apparently it wasn't.

I hope someone else comes along who's had this experience and can give you more information about an exchange (I didn't have that issue), but it could be something you'd have to put off for a while - but hopefully not indefinitely - depending on necessary treatment.

Good luck and I'll be thinking good thoughts for you!

You're so welcome, I'm glad I can help. I'm still learning to navigate this diagnosis so I hope I don't speak out of turn.

My insurance should cover any further reconstruction I choose to complete at a later date (abdominal scar clean-up, removing fat necroses from my flap, creating a nipple and refining the breast, and cleaning up other scars). I don't believe there's any timeframe within which I'd need to have it done. The lytic lesions on my spine were discovered during the CT used for planning the surgery (mapping my abdominal vascularity). A couple of months later they were gone but the rib lesions appeared. My new MO seems to think the original lesions were resolved by my previously-completed chemo, and the new lesions are just that - new. Ugh. Anyway - no pain or other symptoms until just recently. I have another bone and CT scan next week to look for progression, and we'll determine a treatment plan at that time.

My original tumor was 1.3cm with four nodes with ITCs; my Oncotype score came back at 42 which took me off the fence and gave me chemo. Second occurrence was 1cm with no ITCs or positive nodes, but TN. Our challenge right now is determining whether these mets are ER+ or TN (or maybe something else), but ribs are very difficult to biopsy. So, we wait.


My MO has explained to me over the last several years that scans are not routinely done unless there are symptoms. The reasoning is two-fold: First, quality of life, and second, early dx of mets does not extend overall survival. That seems counterintuitive, I know (find them early and treat them small, maybe survival is increased, but studies show that's not the case. And now you've done more chemo or radiation, which has its own set of issues). Treatment now is not curative but rather palliative. As long as I feel good and am not in any pain, there's no reason for treatment that's going to make me feel bad. Now that I know i have mets, I wish for those moments before when I didn't know, and I had some reasonable worries (and hope). In some ways the knowledge means I no longer wonder when the other shoe will drop - now I am just barefoot.