Mayo Email

Friends,
I don’t know when, but somewhere along the line I had heard that the Mayo Clinic was a top hospital in the middle of nowhere. It’s hard to fathom just how good and remote the Mayo is until you are there. In the middle of corn fields that stretch for miles stands a small town with a 5x5 block downtown comprised of about 20 buildings, 18 of which are the Mayo Clinic, all connected by underground walkways. The buildings are understated but the people working there are as good as I’ve ever come across. They’ve taken one of the oldest, truest and most difficult to execute idioms from business and applied it to medicine – the needs of the patient come first. In a world where profits matter, it’s amazing how many doctors lose sight of that.

The first doctor I saw at the Mayo Clinic was Dr. Kamath, a gastroenterologist who has been there for 20+ years and is what I would consider an exceptional doctor. He had a calming presence, was confident and knowledgeable but able to translate that knowledge into digestible bits, and gave me his undivided attention. Since I was seeking a second opinion, he decided to start at ground zero without relying on past medical tests/records. His approach was broken out into 4 pieces: diagnose the disease, determine the extent, outline the best treatment options, and discuss a long term prognosis. After a few tests, Dr. Kamath confirmed that I do in fact have fibrolamellar carcinoma and that it is in the locations we initially thought (liver and lungs). Because fibrolamellar is so rare, he deferred to the chair of the department (his boss) to discuss the best treatment options. He also declined to provide a diagnosis since the cancer is so rare, has not been studied extensively and the few patients he has treated had widely variant results. I took this as a good thing.

The next day I saw Dr. Gores, the head of gastroenterology and hepatology at the Mayo Clinic. As I was walking down the hallway to the waiting room for Dr. Gores, I noticed a nondescript plaque hanging on the wall. It was the US News and World Report national hospital rankings for gastroenterology. From 1990 through 2007, the Mayo Clinic was rated #1 each year. Impressive. While Dr. Gores didn’t have the same presence as Dr. Kamath, his knowledge of liver disease and the type of treatments was outstanding. In short, I’m not a surgery candidate right now. There are two main reasons: I still have blood clots in my lungs – those will take about 8-12 weeks to dissolve, and they need the tumors in my lung to shrink a little. However, they were optimistic that I could become a surgery candidate in the future. If surgery does become an option, Dr. Gores agreed that Dr. Nagorney would be the one to do it. With surgery on hold for now, we will leverage chemotherapy to begin the fight. Dr. Gores agreed that the chemo I am currently taking (Nexavar) is the best option, but also added an additional chemo pill – Rapamycin. These two pills will work in tandem to attack the cancer cells in different ways. The Nexavar works to cut off the blood from the tumor, which is essentially cutting off the "food" for cancer cells. In theory, this causes the cancer cells to weaken. The Rapamycin then target the weakened cancer cells and speeds up their destruction. (I'm sure I just made a bunch of brilliant doctors cringe with my rudimentary explanation!) Next steps are to have another CT scan in 3 months to see how my body is responding to the chemo. Dr. Gores said one thing that has stuck with me and helped put the treatment process into perspective - "Many doctors confuse toxicity with effectiveness. It's all about finding the right treatment for the type of cancer you and that doesn't necessarily mean piling on the pills or procedures".

I now have a confirmed diagnosis and a more concrete treatment plan I am comfortable with. I know what needs to happen in the coming months and am putting all my energy towards attaining that. I’m looking at each milestone as a challenge – if you tell me I should be somewhere in 3 months, I’m going to push my body to get there in 2. I’m also back at work full-time and am going to try to get back on the golf course. Not sure the latter is the best idea since I’m supposed to keep my stress levels low!

Although this might seem repetitive – it never gets old for me – thank you for all the support. The contacts, offers to lend a hand, and general updates make all the difference.

Rhone