Hi,
Thanks everyone for the replies. I thought I would post an update from last week. There are two hospitals in my city that are certified for colo-rectal cancer. The smaller one is the one I visited before (they do about 40 rectal surgeries per year, but I had trouble communicating with the surgeon). I also visited the other, larger hospital. The surgeon I talked to (who is not the colorectal surgeon) said they do about 50 surgeries per year. They discussed my case in their tumor board also and gave the same advice: chemoradiation with Xeloda.
My wife also got me an appointment with an oncologist at the Darmkrebs Spitzencentrum in Berlin. This guy is an author on lot of studies specifically on chemo for colorectal cancer, so at least there would not be some new treatment method going on that he doesn't know about. He also chased down one of their surgeons for us. The guy was apparently on a break between surgeries. It seems he does colorectal surgeries exclusively and does a lot of them. The oncologist said that my case is really straightforward and their guidelines will always say chemoradiation is the way to go. There was some question about whether the surgeon would recommend skipping it and operating right away, but he also wants to shrink the tumor. I asked the oncologist about neoadjuvant chemo, but he is very against it.
Since I'm probably stage 3 and will have to do adjuvant chemo anyway, the rationale for neoadjuvant chemo seems like a great idea. Try to stunt or kill any micrometastes early, instead of giving them another 4 months to establish themselves and grow while I'm doing radiation, rest, and surgery. I tried to bring it up with the oncologists, but it seems in Germany the S3 guidelines that the certified clinics have to follow basically categorically forbid it. It's is the expert consensus here. You can see the guidelines here
https://www.leitlinienprogramm-onkologie.de/index.php?id=16&type=0, and the actual relevant part (in English) is page 172 here
https://www.leitlinienprogramm-onkologie.de/fileadmin/user_upload/Downloads/Leitlinien/Kolorektales_Karzinom/Version_2/GGPO_Guideline_Colorectal_Cancer_2.1.pdf.
This is only speculating, but I can think of two reasons. One is that there is no accepted recipe for neoadjuvant chemo. There's lots of trials with different processes, but how can they fit it in to the guidelines if there is no clear-cut recipe? Second, from the perspective of the doctors, what if they start doing neoadjuvant chemo and they studies finish and show no significant benefit. Then they have given chemo to some fraction of the patients who didn't need it. From the patient's perspective, this aloof reasoning this is really frustrating. I would
gladly take the risk of doing some unnecessary chemo if there's even a chance of improving my odds of survival.
Last week I got some Xes marked on my hips for the radiation and have my first session today. I started taking my Xeloda this morning and feel totally normal. I'm actually really hungry still, but am trying to wait until lunch. Over the weekend my wife and I tried to clean and sterilize the house as well as we could. Doorknobs, light switches, computer stuff, archaeology to the back of the refrigerator. I'm still hauling my kid to kindergarten and going to work like normal. I got out for a long ride on the weekend took the kid to the zoo.