HELP

pink36

So I was diagnosed with Triple positive BC in May 2018. I had a pet scan in June 2018. I got the results the same day that I started chemo. In addition to the breast lump and an axilla and pectoral node, a mediastinal node and liver nodule lit up. The doctor said that my treatment would be the same regardless of stage so she wasn't concerned about doing a biopsy. I didn't know any better so I didn't push her. Well after I had completed two rounds of chemo, she tells me that the tumor board has recommended that she do a liver biopsy. Well when they went in to biopsy the liver nodule, it was gone. By this time she had already declared that I was stage 4. So now I am NED. My breast lump was removed and I had a sentinel node dissection. My follow up scans showed that the mediastinal node had completely resolved.

Well now my doctor wants to treat me like an early stager and stop my H & P at the year mark since I'm NED. I was in a stage 4 group on facebook and was kicked out because they didn't feel like I was really stage 4 since I didn't have any pathology to support it. I don't want to treat unnecessarily but I also don't want to stop treatment prematurely.

Has anyone gone through anything similar?

illimae

I’m shocked your doctor didn’t order a biopsy to confirm metastasis before beginning chemo. If you have any reports stating that the liver mass was at least suspicious for metastasis and want to continue H&P, I’d fight for it.

pajim

Huh. pink36, this is a hard one. One one hand it's really great that all the nodules resolved with chemotherapy. NED, yeah!! On the other hand, the fact that they resolved with chemotherapy makes them more likely to have been something affected by chemo (if you know what I mean).

What about a second opinion? Take all the scans to a different cancer center and see what they think.

IF (and I think it's a big IF but I'm not HER2+) you stop the H&P at the year mark, your MO needs to have a plan for monitoring you closely. If she wants to send you off into the wide world with nothing I'd worry a lot. Because if you do have mets, they're going to come back. HER2+ is an easily-treated disease, but without treatment it spreads like crazy.