Taking Charge and Never Giving Up

One thing that I have to emphasize to every cancer patient is to never be satisfied with the opinion of just one doctor.

Doctors work within the auspices of hospitals or medical organizations. Their knowledge of advances in medicine or technology is often limited to what the overall organization offers.

Just through the weekend I have researched doctors who perform the ablation surgical procedure, which inserts a needle into a tumor and freezes it or burns it, on an out-patient basis, and is very minimally invasive.

I've also found a new radiation technique called tomography, that incorporates a CT scanner into a machine that delivers radiation with pin-point accuracy to spare healthy tissue from radiation harm. The closest hospital using tomography is in Chambersburg.

And there is a Phase II clinical trial in process for a new pill-based kidney cancer chemotherapy named "Radd."

My oncologist in Lancaster doesn't have knowledge of any of these things. And if I was content to have his opinion, and his opinion alone, I'd be limiting myself to all of the treatment possibilities.

For today, Barb and I still wait to hear from the Lancaster oncologist who is expected to confer with the kidney cancer specialist at the University of Pennsylvania.

What we expect to hear is the verdict on what chemotherapy to switch to. We're expecting the IV-based Torisel, and we're OK with that. Most reports from patients on Torisel indicate less side-effects than Nexavar, and effectiveness in slowing cancer growth. Although Torisel can come with its own ideas of chemo "fun," everyone is their own snowflake and I won't know how exactly it will effect me until I start taking it.

There is a chance that the oncologist here and in Philly will never talk. If that's the case we do have an appointment in Philadelphia set for Thursday. But we are really hoping that doctor can talk to doctor (what a novel concept) and save us the tough trip to the big city. I did originally try to set up a phone consultation with the Philly specialist, but he refused. It's against his policy.

OK.

Maybe I need to start developing some policies. What do you think?

Our family doctor is great. And I'm hoping that after the chemo decision I can get together with him and pow wow on all the treatment options I discovered this weekend. I'm hoping he can help me track down the best options, the best treatments, at the best places.

It's going to be a tough one, I'm sure. But what hasn't been tough along this journey? And that's why I call it a fight.