Back from Mayo. I guess I was secretly hoping that Dr, Hunter, one of the world's foremost experts on this particular type of cancer, would say positive things -- possibly make me feel better about the staging of my cancer... or that Dr, Ungawa had somehow overstated or exaggerated my condition. He didn't. The news is bleak, honestly.
Dr. Hunter's recommended course of action is more extreme and more invasive than Dr. Ungawa's. Dr. Hunter does laparoscopic surgery but wouldn't in this case as he wants to see and feel the lymph nodes in the area and the bladder. He's done about 100 bladder cystectomies (exactly the same kind he would do on me) this year alone, so he is definitely the guy for the job if I can get in to see him for the surgery. On another note, I am the youngest he's personally seen with bladder cancer, usually not even affecting lifetime smokers until they're 60 or more. He says whatever is going on with me is very aggressive so he recommends aggressive action to make sure it doesn't recur or spread.
The game plan changes somewhat after talking to Dr. Hunter: He recommends chemo *first* (3 to 4 months worth, the same regimen and drugs as the oncologist I met with) and then surgery *after*. Ungawa's current plan has me doing surgery first and chemo and radiation afterward. The chemo can be done wherever, and doing it at Mayo would be needlessly far away -- adding a 2 hour drive onto each side of a 6-hour treatment sounds pretty horrible to me. I'll just do it in Minneapolis at my oncologist's. Dr. Hunter doesn't recommend radiation at all, as that apparently permanently changes the bladder tissues, making any further procedures that might be needed impossible.
What this all means is that I will have time before the surgery (as much as 5 months) while I undergo chemotherapy, so I can do everything possible to get my coverage changed to a network (like UCare) that will cover Mayo. Even if this isn't possible (and I'm now worried about Dr, Ungawa's abilities based on the contrasting courses of action each had) I will follow Dr. Hunter's advice on doing the chemo first.
Though this was a sobering visit that put things into very clear perspective, I am extremely glad that I met with him. He was knowledgeable, personable, and patient.
I have some hard decisions to make, but at least I don't have to feel rushed into them.
Monday, June 28, 2010
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6 comments:
Hey, Michael, so sorry to hear the news, but like you said better to get the right plan from the right man now.
So...am I reading this right......
You need to do chemo 3-4 months, then do the cystectomy with Hunter later, because with that surgery you can see and feel the lymphnodes, but you can't do that with the laporoscopic surgery?
And they can't tell anything about the lymphnodes until they do the surgery, correct?
Hey, Lynn, yep that's how and why, and that's the plan if I have my way!
Well, you WILL have your way, even if the rest of us have to pay a little visit to those insurance decision-makers, if you know what I mean.............
This is very scary but it sounds like Hunter gave you the answers you need to make realistic decisions. Remember that no one knows what your unique prognosis will be. You are a young and healthy man and could well confound all their predictions.
Just tell the Dr. Ungawa that after talking to Dr. Hunter. You want Chemo first and then surgery.
But is sound like Dr. Ungawa is a surgeon first and then what ever else, He want to do what his field is first, and that is surgery.
This way you can get Group Death to pay for some of it, before switching insurance.
Eric
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