When things are a little bit quiet down now, I keep looking for 3rd or 4th opinion. Shands and CCH have different diagnosis and treatment plan. I need a 3rd and even 4th opinion to give me an assurance. Luke and me have probably found all we can find online about this type of cancer. We read the paper with wikipedia and are not so sure how much we understand. Since there aren't so much I can find from the official paper, I am thinking about patients. I believe cancer patients and their families are the ones who are knowledgable about everything, from who is best specialist, new drug, clinical trials to diet, alternative treatment plans, because they are the ones fighting for their lives.
Every night, I searched in different cancer forums to look for patients of same subtype. It's not fun to join a cancer forum. It's heart-wrenching to see someone posted a message, then a few months later that person passed away. But I have to read them. There are posts of encouragement, posts of hope and posts of great information. I finally found a good kidney cancer forum with a group of cancer warriors from all over the world. I posted question there and someone emailed me right away. He mentioned a name from National Cancer Institute, who is one of the most brilliant minds in kidney cancer research. I emailed the doctor and called his office right away. He emailed me back and said they have a long term interest in this subtype and they are the one identifyed the gene for and described this type of cancer in 1996. He said they have a team working on a treatment approach to this disorder. I will send him everything I have so far.
At the same time, I contacted Dana-Farber. RCC oncologist already discussed Joey's case yesterday at the meeting.I pray that we can benefit more from these two institutes.