Thought it would be easier to add updates here for anyone wanting to follow Kath’s progress. As some of you know, today was our first meeting with oncologist #1 of 2. This guy was a radiation specialist. Wasnt sure why at first we were going the radiation route, but doing some research, it seems its often done when margins are narrow. When they did the Whipple procedure, the pathologist examined everything taken out– so all of the duodenum, part of the stomach, some ducts, 19 lymph nodes, part of the small intestine, and a good chunk of the pancreas. The pathologist was reasonably certain the primary site was duodenal, but that it had invaded (metastasized) to a large part of the pancreas. The margins were clear on what was pulled out, but only by 1mm. So oncologist thinks radiation in combo with chemo should be done . We dont meet with chemo guy until next Tuesday.
The Dr. seemed good enough. Young. Took time to answer our questions, and didnt seem to bullshit. I like it when I hear answers like “I dont know” as I prefer that to someone blowing smoke. Chemo oncologist is older on the other hand. Young, old, either can be a plus or a minus. He said we could get a second, third opinion and some will agree with radiation, some will not. As this is a very rare cancer, there are no statistically significant studies. We found a few meta studies that had an n of about 100, but that included patient data from 1974 to now and patients from 30 to 85. So cant really draw too much from that as there are far too many variables to control– age, general health, stage of cancer, grade of tumor, where it has gone, health of other organs, where they were treated, when it was discovered etc, etc.
Our assigned nurse gave us a bit of a scare. I guess something she was reading was not clear or she didnt read it close enough, as she referred to Kath as having pancreatic cancer which is a world of difference that duodenal. 5yr survival rate on pancreatic is 3-5%, Duodenal can be anywhere from 30% to 60%. Luckily I had the pathology report with me, so we quickly cleared that up. If you want a good overview, the medscape site is pretty good. You have to keep in mind the population #s in some of the stats given are extremely small. So when they say 30% survival rate, that includes people who did not have surgery like Kath did -which is the most important factor for predicting successful outcomes. It also includes people older than 60, who typically are physically not as resilient as someone in their 40s and tend to have other medical conditions going on.
In some ways, the day was a bit anti-climactic. We kind of prepared ahead of time for the various scenarios. We didnt of course hear anything definitive and when I asked at the end, what he thought the prognosis was, he really could not commit an answer which is what we figured. We did talk ahead of time what we would do if he said, something like “Hi, I am here to give you palliative care”, but we agreed we would just ask to see someone else, as its hard to see how things could be definitively dire.
So here we are at the start of chapter three. Radiation to come and some nasty chemical concoctions we have yet to hear about. Kath is a bit anxious and understandably so. She is going to get 25 blasts of radiation and it is all still fog ahead with not much visibility
Mike and Kathleen,
This blog is a great idea, thanks for starting it! Next time I see my oncologist, I will ask him who the definitive experts are on this cancer,in the US.
The upside to radiation is that it is a painfree procedure. You don’t feel anything while it is going on.
Hang in there. I will be following things closely and please know that I’ll be thinking of you even more often.
Sending positive, happy, warm thoughts from Southern California.