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@robee

My visits to MSK require arranging a flight and hotel which is expensive. I will gladly do that on occasion but cannot do that for Chemo treatments. And I wouldn’t move there if I could. Family keeps me strong and being away is so isolating.

Im trying to arrange a virtual visit with their oncology team to see if I would be eligible for any clinical trials. In the mean time I am now going to a comprehensive cancer center for chemo. So far they have been open to suggestions from MSK.

Unfortunately with this cancer, everyone responds differently and each center does things differently. It’s hard to know if you are getting the “best” option. I have changed local oncologists twice because I felt they were not fighting hard enough or answering my questions about different treatments. I truly felt they were just going through the motions to bill my insurance. I needed someone somewhat knowledgeable about different options AND honest with me if they didn’t. My current oncologist seems to fit that description.

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Replies to "My visits to MSK require arranging a flight and hotel which is expensive. I will gladly..."

Robee, I agree with your comment: "Unfortunately with this cancer, everyone responds differently and each center does things differently." As I continue to research and learn, I am amazed at the variations in treatment options and approaches to pancan. It is really difficult to know whether you're getting the "right" treatment or the "best" treatment for your particular situation. It is always incumbent on every patient (or caregiver) to ask questions and make sure that treatment is appropriate, but it seems especially incumbent on those of us dealing with pancan. You can't approach this disease blindly. It requires a lot of work and advocacy.

Re relocating to a pancan center of excellence, I am torn. Would I move? No. Would I travel? Hm. Unsure. I have done medical travel before. Our son, whom we adopted overseas, required clubfoot treatment that local physicians were disinclined to tackle. So we traveled to NYC and, later, Philadelphia dozens of times over a period of years. This required airfare or a long drive, plus hotels and meals--very costly. But there was no question we needed to do it for him. I am not yet at a point where I need to travel for my pancan evals/treatment. I did switch oncologists some months ago, and my new one did his residency at Mayo in Rochester, and he has implemented things he learned there. Plus I feel confident in the nursing and surgical care I've had. So right now, I'll stick with my center, even though it isn't an official pancan center of excellence. (It's affiliated, through hospital system mergers, with one that's in a city elsewhere in our state. That center is actually much smaller--it has only two MDs--so I think its designation comes from research, and my center is clearly doing research on its own and in cooperation with the more-distant center.)