@suelannon Same story for my husband, Surgeon said he got it all and surgery was curative. Our oncologist refused to believe that and there was friction between surgeon and oncologist. She kept my husband on Gem-Abraxane for 14 months. He was in relatively good health and we traveled a little. Then he had to do knee replacement surgery (I thought it was a good idea so we can do hikes again). At that point, PET scans were clear and he looked disease-free. Then complications from knee surgery, a stress fracture and CA19-9 markers climbed from normal to hundreds. Still clear scans. Surgeon recommended more tests but there seemed no reason to do it. Then the next scan picked up recurrence at the resected edge. He went for VMAT with Capecitabine but that did not work. And with the months off chemo, there is some peritoneal spread. He suffered what we thought were side effects from the radiotherapy for over weeks. He could not eat; he had nausea, threw up, had chest pains, had reflux, lung infection and a persistent cough. Chemo (a new regime) could not restart. The onco warded him and now doctors are trying to figure out what is causing all these eating problems. He is being fed intravenously now. My husband developed a volvulus stomach after surgery and I hope doctors are looking into that. The onco will put my husband back on chemo once my husband gets some nutrition into him and gains some weight.
Surgeon miffed with us for not doing more tests. This journey is hard enough for lay people like us; we know nothing and rely on doctors. And sometimes doctors do not help! My mantra is to be our own advocate (read, reasearch, ask questions, change doctors if really necessary) and my husband is not a statistic.
I have kinda 'lost' my husband because he was the problem-solver, the optimistic half-cup-full person, the one who would drop me at the entrance so I need not walk in my heels from the carpark, the one who went to the grocer's when I forgot some ingredient in the middle of cooking. He is now battling depression plus all the other problems and cancer. I am fighting to get him back.; not giving up!