Oct 12, 2011 - 3:35 pm
Hello one and all! I'm a relatively new member and have been quietly observing since my fiancé Bill’s diagnosis of T3N1M0 adenocarcinoma in early June. You guys have a wealth of knowledge and have been an extreme source of inspiration to me! Right now I need help with centers that do post-op chemo.
We live in the Kansas City area. Bill had a liver transplant at the University of Indiana in Indianapolis (IUMed) in August 2008. We’ve continued to go there for his follow up, and he has done BEAUTIFULLY! However, when we were there at the end of May, he was scoped and they found a 7 cm tumor at the esophageal-gastro junction.
Long story short – Bill did post-op chemo and radiation in Indy so they could follow him because of the liver involvement. Since the anti-rejection meds he takes for his transplant can be hard on the kidneys, his chemo was altered a little bit to Taxol and Carbo – 5 days a week for about six weeks. He did really well, and the doctors said “much better than most”.
He was not a candidate for MIE because the surgeon wanted to be able to physically see his liver as he did the surgery as not to cause harm. His surgeon does between 100-120 esophagogastrectomies a year, both the IL method and MIE, so we felt comfortable with our choice. Bill had the Ivor Lewis on August 29th and has progressed nicely, was in the hospital for a total of about 14 days. However, the post-op pathology indicated there were 5/22 nodes positive for cancer, and we also learned post-surgery that Bill’s tumor was HER-2+ (3+). (Even though they determined this from his initial diagnosis.)
We are back in Indy today and just left his one month post-op check up. From all I’ve ready here, I felt like post-op chemo was the norm when there are positive nodes. However, his oncologist at IUMed said there is no evidence that supports post-op chemo even though I said I knew of other centers that are doing it. She replied that she didn’t know how it was being paid for (by insurance), because it wasn’t the standard of care! This contradicts everything I’ve read here.
Apparently they just want to wait to see if it will come back, which I feel sure it will, especially without post-op chemo. She didn’t say that this decision not to offer chemo had anything to do with the HER-2+ or the liver. In fact, she said the liver transplant did not end up being an issue with his surgery and recovery, and she also said she was more concerned about recurrence because of the number of nodes and not the HER-2+. She said they just plain old don’t do it.
So, here we are, six weeks out and the post op chemo window will be closing soon. Today I’ve been in touch with two specialists in our KC area; one who has created/written a lot of the protocol in EC chemo and radiation, and another from the University of Kansas Medical Center (KUMed). I don’t know if either will recommend post-op chemo, but surely there is some center relatively close that will.
We have no problem with jumping from center to center if they’ll offer the most aggressive treatment. For what it’s worth – Mayo Clinic gave Bill two years to live in 2007 and told us flat out there was no center in the US that would transplant him. I couldn’t buy that. I was lucky enough to meet someone online that got us to IUMed and he had a new liver in five weeks after being put on the list. I have nothing against Mayo at all, and I know that just because a center is aggressive in one area does not mean they are in another. While IUMed KICKS BUTT in transplantation, I don’t feel like their GI Surgical Oncology is as aggressive.
Your thoughts, please? We’d like to stay in Kansas City for treatments because Bill is an only child with an elderly mother he cares for. We were gone for four months with the transplant and all summer with this latest chemo, radiation and surgery in Indy, and we need to get back to work! Any tidbits of advice one could offer would be most appreciated!