Monday, August 9, 2010

Questions and Answers

I've talked to my urologist. I've talked to my surgeon. I've talked to my oncologist. I've dug through the internet for whatever I can find (reputable sites) on the bladder cancer and it's treatment (surgery, chemo, radiation). My head is spinning.

Everyone I have met in my brief tenure with cancer treatment (doctors, nurses, PA's, friends ) have told me to ask questions - there is no dumb question. Right? So this morning I started calling around to ask some of my questions.

First I called my surgeon' office and left a message for a call back. I had such a nice, and informative, talk with him last week and I was comfortable with the idea of surgery. After talking with the oncologist I felt a little disoriented because chemo is something I knew nothing about and he was throwing it all at me (a friend says; 'Chemo 101'). I just wanted to get back to the 'simple' concept of surgery; at least something I thought I understood (cut here, stitch there, wake up, press "the button", heal ).

The surgeon's nurse called me back within 30 minutes. She said he was unavailable to talk but she could send him my questions. How do you put what I said above into a question? After several attempts I finally said to ask if, in his experience, people with my form and degree of this cancer generally opt to have neo-adjuvant chemotherapy. And if, in his experience, this is the 'standard of care' the oncologist claimed. That's all I could come up with.
  • Later in the afternoon - while we were at the fair - she called me back and said the surgeon agreed with this course of action and said it has demonstrated good long term results in treating and iliminating the form and stage of cancer that I have.
Then I called my oncologist. Again, I got a service and I asked for someone in oncology group to call me back to answer some questions raised on the internet. Within 10 minutes an oncology nurse, called me back. We had a nice long chat and I posed my questions about side effects and mode of action (based mostly on what I've been reading on-line).

Indiscriminate (chemo attacks all actively dividing cells): Blast away and hope it hits the enemy (carpet bombing).
  • she said this is a good one to ask the doctor - she said please ask the doctor.
Nausea: One of the primary side effects of the Gemzar and Cisplatin.
  • she said this is something they have learned how to treat very successfully and she listed out (and entered orders for) the following:
  • Amend - the front-line defense (and expensive). IV during chemo and one per day after.
  • Prochlorperazine (this is the fine tuning - take if I still feel nauseous )
  • Zofran (Ondansecon) - second regular defence. IV during chemo and every 12 hours after.
Nerve damage: I'm most concerned about the permanent or long term effects on the nervous system and even brain function.
  • Nerve damage (Neuropathy) - like all the side effects - is closely monitored during the treatment cycles. If symptoms appear, dosages and even chemicals may be adjusted between treatments and/or cycles.
  • Chemo is administered in cycles (doses) over time. Side effects don't happen all at once (like a light switch); they are cumulative. We (the oncologist and me) carefully evaluate effects and progress after each treatment and cycle and make adjustments if necessary.
  • Agreeing to chemo is not signing a contract to continue to the end. These side effects If, at any time, we decide the treatment is worse than the disease we can stop and move right to the next step (surgery). I have been told this but all the ramifications hadn't really sunk in - it was a relief.
  • Again, this is a good one to ask the doctor.
Loss of hearing (temporary and permenant): I am already half deaf (40-60% loss).
  • Again, this is monitored and adjustments made. I made an appoint with my audiologist for a hearing exam. It's been too long since I've had one anyway.
Finally, she said to think of cancer as a thistle that we don't want. Surgery goes after the thistle but not any seeds. Chemo goes after both.

I've spent 60 years taking - what I consider to be - very good care of this body. I work out. I stay in shape, watch my weight, don't smoke, avoid salt and sugar (AND high fructose corn syrup). All that.... And each new doctor I meet is amazed that I don't take any pills. I don't want some 'arbitrary' (unecessary?) treatment to undo what I've done just on the chance it will be benificial.

But, I much better after these discussions - I've done all I can do for now and the next step is a discussion with my oncoligist before treatment.

Wife and I decided to go to State Faire in Milwaukee. We've never been there and always say we should go.

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