Today I will be back at the hospital for the first time in nearly two weeks. The oncologist will update me on my condition and probably also outline a schedule for chemotherapy. It's good to talk; I'm quite confused about this cancer. To get some clarity, I have prepared a number of questions that I'll take with me to stimulate the discussion.
- What caused the colon wall cells to run amok? Were any mutations found in tumor suppressor genes, kinases, etc.?
→ There are no mutations specific to hereditary colon cancers. This is good news for the family. There might be spontaneous mutations in regulatory proteins. The doctor didn't go into specifics and I didn't press. - Do I still have colon cancer? The tumor is gone. What do I call my condition?
→ I most definitely still have colon cancer. The metastases were derived from the primary tumor, as are the micrometastases and free cancerous cells that chemotherapy is supposed to kill off. - What are the chances the tumor has spread beyond what we have seen and ruled out? What are the chances it will?
→ The oncologist thought only the liver is likely target. - Will treatment focus on the peritoneum where the metastases were found? How is the rest of the body kept clean?
→ Chemotherapy is systemic. The oncologists didn't think the more localized HIPEC treatment was worth the risk as it's unlikely to improve my prognosis. - I will probably not be strong enough to ask the question of whether we are talking curative or palliative chemotherapy, and in the end it probably doesn't matter. I'll take everything I have to do as a step on the way to a cure.
→ Here, the doctor helped, if that's the right word. He spoke of life-prolonging and quality of life-increasing therapy. The chance of a cure is very slim. - Will my health insurance cover the treatment? There had been some doubt about the cost of one of the antibodies.
→ Yes. This is a civilized country. Everything is covered beyond the annual deductible and my 10% share. - During earlier discussions, the surgeons and the oncologists were in agreement that my case (of extensive metastases in the peritoneum but not in organs) was highly unusual. If I need to lighten the mood, I could ask whether I might be the basis of a case study in a clinical research journal. I'd even help write the paper if I can have co-authorship.
→ Highly unusual for sure, but no word of a joint paper yet. - A similarly ridiculous question (because I know the answer) is whether I could be present during the next Tumor Board meeting discussing my case. I'd even wear a white coat.
Before I go to the consultation today at eleven, a quick general update: Yesterday was a brilliant day. In the morning, I ripped off the remaining stickers that covered the cut down my belly. It didn't hurt, and the cut looked nice. I weighed above 58 kg without any clothes. I ate (not outrageous amounts but a lot) and felt good about it. No breakdown like two days earlier. I didn't even need to rest. It felt almost normal. Not eating too much might be an important point.
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