What's Next?

I met with my oncologist today. For the moment, everything is up in the air.

First, the good news. We got both my CT scan and my bone scan back, and neither of them show anything new. That's very, very good. That means that there is no indication of any new cancer. I was a little concerned that, after finding viable cancer in the lymph nodes that they removed during surgery, that during the two months between my surgery and radiation, something else might have started growing. And, if it has, it hasn't grown enough to show up on the scans. And, with a pretty aggressive cancer, that's good news.

I don't have bad news. I just have "I don't know" news. It means that I still don't know what's next. I may or may not have more chemo. Right now, that decision rests in my hands. If we do more chemo, we really have to wait about 4-6 weeks after radiation before we can start. So, at the earliest that's the first week of December, but mid-December is more likely.

In the meantime, I have a decision to make about whether I want to do that now. The fact that no new cancer appeared in my scans is a good sign that maybe it's not necessary. On the other hand, there could be microscopic cancer that just didn't show up on the scans. There's no way to tell these things without just waiting for something to appear. And, it might never appear. Or it could show up a few months or a few years from now.

Also, if I were to go ahead with more chemo, there's no way to measure whether it's doing anything. Without any evidence of cancer in my system, there's nothing to measure against. We would just do it as a "just in case" scenario. On the other hand, if there is microscopic cancer cells elsewhere in my body, doing more chemo could kill them off even though I would never even know they were present.

If I do more chemo, I'm really only looking at three sessions. The treatment that I would do is pretty much the same as the initial treatment I did at the beginning of the year, with a focus on the andriamycin. I can either take just the andiramycin, which means that I would get chemo every week for three weeks. Or, I can combine it with the cytoxan again (like I did at the beginning of the year), and I would need to take that every other week. Either way, it would only be three sessions. Don't ask me what the difference is because my head was spinning when we were talking about this, and I didn't think to ask that question. When I get an answer for it, I'll let you know.

At this point, doing more chemo is just a safety precaution to make sure we've done all we can do to treat the cancer with which I was diagnosed. If it doesn't respond to the next three treatments, then I've probably gotten the maximum benefit I can get from chemo, and we should probably just move onto the next phase of treatment. (More on that in a moment.) By the way, the reason I could only do three more treatments is that your body can only take so much andriamycin (cumulatively) before it presents a risk to the heart. I'm a little over halfway there. About three and half sessions would maximize how much I can have.

Generally, ibc has been shown to respond more favorably to aggressive treatment, so at the moment, I'm leaning towards getting more chemo. It would only be a few more weeks and, even though I would lose my hair, it would be over quickly and I could start getting back to normal. And, that way, I will know that I did everything to treat it that I could. If something were to appear five years from now, I won't be wondering if more treatment could have prevented it.

There's one other drug that is an option that has been shown to have very favorable results in ibc patients prior to surgery. This is key because the drug actually has an affect on surgical scars in that they could start "undoing" themselves. Not a good thing for me. However, if we were to wait until December that might be enough time for the impact to be minimal. This is a brand new drug that my doctor just learned about, so while he's researching it out a bit more, I will be doing my own research online.

I also think I'm going to see if I can find an expert on ibc, although that might be a challenge. It's not that I don't trust my doctor. I trust him a great deal, but ibc is so rare that while he does have experience with it, it's not a lot. Of course, that may be true of everyone I encounter. I'd like to talk to someone (or have him talk to someone) that has made ibc a specialty. I don't think I would need to see this person myself, but if my doctor spoke with him or her and shared my medical history, that might spark something that gives me a better idea of the best course of action to take.

Most likely, I'll have the chemo, which means that the next question become whether I repeat the andriamycin or try something different. Sigh. So many decisions, so little information.