FightCRC wrote: I do want to be seen at a NIH-designated Cancer Center.
Felix, YES! This is the right move to make!
Short background on me - I was diagnosed as a Stage IV with multiple mets to my liver and one met in the bottom of each lung. My local cancer center basically said 6 months without chemo or 18 months if I had a good response to chemo. After 14 months of chemo at my local cancer center, I went for a second opinion at MSK. Despite the dire prediction of my local oncologist, they said I was a good candidate for a liver resection and an HAI pump. Six weeks later I was in NYC having surgery (removal of rectal tumor, liver resection, and implantation of HAI pump).
Three months later they did a double-lung surgery and removed the tumors from my lungs. I also had my ileostomy reversed during the same surgery. I am officially NED now, free of all cancer. The moral of this story is I'd be long gone if I had stayed with my local cancer center. That's why I'm glad to hear you're planning to go to an NIH-designated Cancer Center! It can make an enormous difference in your treatment options and your wife's chance of beating this.
As far as the HAI pump, I've heard very good things about Dr. Fong. (For reference, my surgeon was Dr. D'Angelica at MSKCC.) I think you would do fine with him if he agrees to do the procedure. As far as the colon resection, ask him to give you a referral to the top colorectal surgeon at City of Hope. (Again, for reference, my colorectal surgeon was Dr. Weiser at MSKCC.) There is also an HAI pump program at OHSU in Portland, Oregon, just so you know.
Dr. Kemeny and MSKCC have the most experience with the HAI pump. They are ones who started the program and they have thousands of patients who come there from all over the world just to see her. I've met people from Israel, Germany, and other countries in the waiting room. She is a brilliant doc, no two ways about it. But the ones who've trained there like Dr. Fong are carrying on her expertise. So I think you'd be fine with him unless there is some disconnect at your first meeting. The team isn't just her oncologist, her liver surgeon, her colorectal surgeon, etc. The team also includes you and her. So if you feel like there are communication issues, then make a consultation appointment at MSKCC. Otherwise, my advice (for what it's worth) is to stay with Dr. Fong.
As far as moving to NYC, I'm from the west coast too. Moving to NYC on short notice was tense and frightening. I didn't know a soul there, much less how to get around the city. But I managed to rent an apartment, not far from MSK, and learned my way around. I actually fell in love with the city, and MSK held my hand through every single worry during my treatment. If you're from out-of-state, they monitor you quite closely, providing you with a strong support system. I understand you'd rather stay where you are and that makes sense to me in your case. I just wanted you to know it can be done and it's not as bad as you might be imagining at this point. If you decide to go that route, let me know and I can give you some advice.
And to hell with that "no curative intent" crap from Kaiser!!!
Take your wife to Dr. Fong or Dr. Kemeny. You won't regret it. More and more docs are realizing that some Stage IVs can be "cured" and it's vital for you to find someone with that mindset. Stay strong and do what you have to do.
Feel free to PM me if you have questions about MSK, etc. And tell your wife hello from me!