Sep 23, 2012 - 9:10 pm
My husband, Steve, and I live in Ontario. He was diagnosed with ulcerative colitis in 1999. He was quite sick off and on throughout the years. Despite regular scopes, he was diagnosed with stage 4 colorectal in June 2011. Even though the cancer was in the sigmoid colon, the entire colon was removed because of the UC. He has a permanent ileostomy. Mets to the peritoneal cavity. Lungs and liver appeared fine. He adjusted well to the ileostomy (no choice but to accept it) and did 13 rounds of folfiri with Avastin at Ottawa General. His oncologist reluctantly referred him to Maisonneuve Rosemont Hospital in Montreal to be assessed for Hipec. The oncologist knew very little of the surgery, just that it was dangerous. She advised against it. The surgeon in Montreal was Dr. Lucas Sideris and we love him. Very positive. Said approximately 50% chance of a cure, depending on the lymph node status. Even though Steve's cancer was contained to the abdominal cavity, we first learned of Hipec from the evening news. Isn't that interesting?! Steve had surgery on April 13, 2012. Surgery took 8 hrs. Dr Sideris said he treated him very aggressively. Music to our ears. They removed the spleen, tail of the pancreas, 10 cm of small intestine, some abdominal wall and many lymph nodes. They also burned the outer layer of the liver and removed a small part of disease on the stoma. He was in the hospital for two weeks. No complications. Very tired for 8 weeks then back to normal. Lost 25 lbs. The pathology report sounded really positive. No lymph node involvement, only surface cancer. Life seemed great. It was as though a dark cloud had been lifted. We took a nice trip to Boston and got on with our lives. Sept 13, 2012 we met with the surgeon to discuss the result of the fort scan since the surgery (taken two weeks prior to this app). The dark cloud returned. Abdominal cavity looked fine, however, there appeared to be 6 or 7 small lesions in the liver. Dr Sideris seemed as disappointed as we were. I suspect that there had been "seedlings" in the liver prior to surgery but were likely too small to show up on the pet or ct scan. The doctor recommended we skip the biopsy and start asap back on chemo. He says the biopsy will lose us valuable time. He says that depending on how the chemo goes, Steve should be assessed by a liver surgeon to see if resection is a possibility. He will send these recommendations to the regular onc in Ottawa. He tried to be very positive. Told us of the many successes people have had with managing the cancer as a chronic disease etc.. He also pointed out that during the surgery he could tell by the appearance of the tumors that the systemic chemo had been working on them (despite the peritoneal blood barrier). For this reason, he feels that the new round of systemic chemo has an 80% chance of being affective with the tumors in the liver (they love to use percentages!). I must be in denial because I keep focusing on what elso these tiny specs could be besides cancer. He has been in the business a long time and I'm sure he would't be recommending chemo if he wasn't quite certain. Anyways, we meet with the Ottawa oncologist Wed the 26. I'm expecting to hear, "I told you so." It would have been nice to get more of a break before starting round two. Oh well, we'll take what we get.
Right from the beginning, my husband has coped exceptionally well with this diagnosis. He lives one day at a time and does give cancer a great deal of thought. He has many hobbies and interests that keep him busy. It is much more of a struggle for me. The disease is on my mind almost constantly. I'm distracted while at work. I'm constantly doing research to look for ways to fix this problem. I feel consumed by this situation. I realize that I need to find a way to start enjoying life again. I guess it's easier said than done.
Anyhow, that is our story thus far. The one thing that brings me strength is reading these posts from all you guys and learning about all your challenges. You are exceptionally brave people and I find your stories to be very inspiring.
My husband began taking MCP two days ago. The research I've done suggests it is safe to take it while on chemo. If we mention this to the onc she will likely say to stop. Would it be stupid to just stay quiet about the MCP?
Bye for now.