Being Unique

After my visit Friday morning with one of the oncologists who was on the Tumor Board Review team, I am beginning to grasp what it means to be “unique” in the world of cancer. While one might have a certain satisfaction in having a cancer that isn’t like what everyone else has, in fact it’s not a good idea to do so. It puts you in a category where no one knows what to do with you. And that looks like where I am.

My visit with the oncologist was very helpful—and I went prepared, having gone on the Internet the night before and given myself a short course in the different types of uterine cancers and their prognoses. I also had my sheet of questions—a tactic I have found very helpful for doctor’s visits, because otherwise I tend to forget things.

What I learned from him was that, at least based on their pathologist’s reading of my slides, I am occupying a very small corner of a small system within the overall cancer universe. It goes something like this. Uterine sarcomas make up 4-5% of all uterine cancers (themselves not a huge percent of all cancers). There are about three main types of uterine sarcomas. I don’t appear to fit into any of those three. Off in a corner of this already very small territory are a couple of even rarer types, and I may have one of those: a high-grade, undifferentiated sarcoma. Nice going, Kae!

What being that unique means in practice is that there is almost no data on things that one can customarily find out, like survival rates, the types of treatment that seem to be effective, and the results of different types of treatment. The oncologist said they would most likely have to extrapolate from the treatment of soft-tissue sarcomas that occur in other places in the body.

Speaking of other places in the body—that is this oncologist’s primary concern. This cancer travels mainly in the blood. If there really is NO cancer outside the uterus, I am in good shape. If however there happen to be some tiny cancer cells that are not currently large enough to be picked up on a CT scan or show up on any of tests they conducted, chances are they will migrate to some other part of my body (lungs are the primary candidate, followed by liver, then brain, and lastly bones), and eventually show up there. At which point they will be much more difficult to treat than now.

This is round one of deciding “what’s next.” Round two will be my meeting with the oncologist at Group Health (next Wednesday). Round Three will be my second opinion from the UW physician, who is going to have the slides reinterpreted by staff there (unknown time frame—probably a couple of weeks). I think the more heads that get into this one, the better, so I will wait for all of these rounds before entering Round Four—making my decision about what to do.