I had my PET scan on Thursday morning and received the results yesterday. I suppose the best way to simply summarize it is that it’s a mixed bag.
There is mild progression from my scan in April. This means there are more sites of cancer in my bones that are large enough to be detected on these scans (“hot spots”). One hip, one side of my pelvis, one thigh, more tissue and some nodes in my upper chest are all newly affected. Many ribs and one vertebrae continue to be pretty plagued as well but were already lighting up on previous scans.
That said, it is good news that the metastases are still confined to my bones and nodes (honestly, I can’t believe the things I call “good news” these days!). There is no evidence on the scan that it has spread yet to my liver or lungs.
So the scan is overall worse than April but still better than October in that the spots are in the marrow and not eroding bone itself (the fracture I had in my collarbone has healed and the cancer diminished there). This is good and also has the benefit of keeping me mostly pain-free. My chemo causes muscle inflammation which hurts but it’s surely preferable to bone pain. Most other side effects have been the same as before.
So here is where it gets tricky. And if you haven’t figured it out by now, this whole business is quite complicated and full of guesswork. My tumor markers had been rising and it looked like we would need to move to a different chemo. At that point (about a month ago), we decided to increase my chemo dose and see if we could get a response. After two weeks my markers dropped. That was right before the scan.
So, one takeaway is that we are learning that my bloodwork is quite accurately reflecting the cancer’s response to chemo. This is not the case for everyone.
So the million dollar question is: is the scan reflecting the peak progression this time and now that I am on a higher dose of chemo if I continue to have lower markers will we see the scan reflect this in another few months? That is, is the scan showing the worst it got and now with the recent increase in chemo it is actually on a downward trend? That’s the hope: continue to see response. Only time will tell where on that dynamic process this static measure is.
This information puts me in limbo yet again. But that’s really what this world of metastatic breast cancer is. And you know, I would rather have limbo than definite bad news (again, I chuckle at the straws I grasp at here…).
I won’t go into details because this post is growing long, but I did meet this week to discuss possibly enrolling in a clinical trial at Sloan Kettering. This would be a phase 1 trial and would be a strict chemo protocol. I will do a separate post about trials in the future because I think there is a lot to learn about them and also a lot of misinformation about their use with this disease. Bottom line on this particular trial: it wasn’t one I would definitely jump to enroll in. Some additional time to explore it and other options some more would be nice. So “limboland” helps with that, too.
For the next few days (and likely the next few weeks) I will continue taking the higher dose of chemo daily, monitoring the bloodwork every two weeks. I’m having shortness of breath for the first time this week and that is quite unpleasant. It is a side effect of the chemo.
The results are not what I hoped for. But onward I go.
I deal with what is, I adjust to new information as quickly as I can and forge ahead into the unknown.
I thank you for your care and concern this week. As always, it takes some time for me to gather, interpret, and process the information before coherently getting it out to you all.
Link to Twitter