organ preservation

I found out I had grade 4, stage 3 bladder cancer 6 weeks ago. All the urologists wanted to remove the bladder, prostrate, etc. I am a fairly young man (58), and I was not content with that path of treatment. Something in my gut gold me there must be a better way. I got a second opinion from one of the leading universities (UCSF). This was not easy because the insurance company didn’t really want to pay for it. I found out that the new trend, if at all possible, is to preserve the organ, though only the oncologist are the ones who seem to truly believe in this.

Here is some advice I would give to you if you ever have a serious illness: learn everything you can about it, read, talk to people (especially those with the disease), get 2nd and 3rd opinions, become an expert, weigh your opinions, think about how each option will effect your life style, talk to your family and friends, think carefully before you take the advice of someone else or make your decision, and then stick to your guns.

Don’t let doctors that are comfortable with the procedures they have done for years try to talk you into becoming part of their comfort zone, don’t let the insurance companies push you around……… the end, do what is best for you. Do not become a pawn of the medical system. Rely on self-management.

Listen, be patient (excuse the pun), but do what you feel is the most positive course of action for you. Fight through the doubts and never make a decision on a "bad" day.  If it is an organ in question, try to find people who believe in organ preservation. Organ preservation still goes against the grain of most medical professionals, so investigate the possibilities.

I am set for surgery tomorrow (June 26, 2006) to remove that part of the tumor they can get to without perforating the bladder, then the chemoradiation doctors take over in ten days.. It will be 7 weeks of hell, but I have a 50/50 chance of keeping my bladder and other organs as well, and all of my sexual functions. I’m not living in a fairytale, I know that this procedure may not work, but the worse case scenario is that I will have to go back for the radical cestecomy at some time in the future. I just hope that one doctor, or one person realizes that organ preservation is a legitimate option and should be offered whenever possible.

surfman Author