Introductory Experience at Mayo Clinic, Rochester, MN

I wanted to post about my experiences over the past week with Mayo – Rochester for reference by anyone else.

A quick bio: I am a 29 yo male, Ulcerative Colitis since 1996, PSC and CC diagnosed in November 2008.

I went to Mayo on Dec 17. Had a CT scan and blood work done the first day and met with Dr. Axel Grothey (medical oncologist) on day two.

Dr. Grothey is a very nice man and seems very intelligent. Highly recommended.

I was originally recommended to Mayo for possible Cyberknife and transplant to cure CC. Unfortunately, he determined that was likely not a possibility seeing as the main tumor was too large (6.7cm) and there are random scattered other tumors on my liver and possibly in my abdomen. His only thoughts were chemo therapy. But here’s where he provided great service:

Instead of saying, “I think chemo is your only option and you should do it.” He said, “We want to make sure every last stone is overturned and I want you to speak with a number of my colleagues so you know all of the available options to you.” Very reassuring and positive.

I then saw Dr. Lewis Roberts, gastroenterologist and hepatologist, also a very nice man, and very intelligent. He explained many more options for treatment including: Theraspheres, photodynamic therapy, differences between radio-/chemo- embolization, and some others. Really made me think that I had some choice and control over my situation which helps make you feel good.

I also saw a few doctors from the liver transplant team (but they were not nearly as reassuring – did not know how to deal very well with patients that are not candidates for transplant – made me very depressed) and was scheduled to see Dr. John Donohue, surgeon – but we cancelled that after Dr. Grothey had spoken to him. No surgery options available.

My decision right now is to attack the main tumor on my liver through Theraspheres – possibly at Johns Hopkins which is a bit closer to my home than Mayo and then see what I can do about the other metasteses – which have unfortunately reached my lymph nodes. I’m hoping my new diet experiments can control/weaken those tumors. I’m trying some combination of macrobiotic and raw veggie diet (promoted on the film “Crazy Sexy Cancer”). The point being to consume as little sugar as possible to avoid feeding the tumors.

Some quick other points:
Mayo seems to be one of the few institutions in the country using Theraspheres for liver metasteses.
Memorial Sloan Kettering in NYC – which I was hoping to go to for treatment, and is renowned for much of their cancer work – does not do Theraspheres treatment yet, but is hoping to have something in place by summer/fall 09.

I hope this info can be helpful to someone.
Best, John