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Dear Doctor.....

9 years 4 months ago #26854 by Melodie
Mike,

Great Idea! Now we just need to find a way to get many of them to slow down long enough to read it. :unsure: I think my surgeon was awesome but I don't think he even read the letter I sent to him early on...prior to my RC. When he went in and did my second TURB, and I was still under anthesia, he got hit by my 86 year old mother-in-law who had the questions in hand. He answered them as she read them off to him. He wasn't too happy about being slowed down like that but she did get most of the questions answered. :S

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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9 years 5 months ago #26838 by Flamenco.
Mike,
I think your letter says it all, and it would be a great
idea to put it somewhere on the site permanently.

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9 years 5 months ago #26835 by Patricia
I suppose my letter to Dear Knucklehead wouldn't quite cut it huh?:S
Pat

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9 years 5 months ago #26830 by sara.anne
Mike, I think this should be inscribed in marble at the entrace to our web site. Please be sure you have carefully saved it so that it can be used EVERY TIME SOMEONE NEW COMES TO OUR SITE.

Thank you for saying it so well

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 5 months ago #26828 by Nix
Amen! Well written................







Nix

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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9 years 5 months ago - 9 years 5 months ago #26819 by mmc
The following are just some random thoughts I had about things to communicate to a local urologist. The thoughts are based on my experience and also the experiences I've read from others on this site. In reality, my local urologist highly recommended that I get to a major bladder cancer center and recommended a couple as soon as I had positive cytologies two years after my initial CIS diagnosis and treatment.

Based on what I've read in posts here in the forum, I get the sense that many people are concerned with insulting their urologist and in some cases urologists may be trying convince patients that they know better than the major bladder cancer centers.

In any case, that line of thought led me to these random thoughts about a hypothetical letter (or conversation) with a local urologist after a diagnosis of bladder cancer.

Mike

Dear Doctor,

Please understand that I am obviously shocked and dismayed by my recent diagnosis of bladder cancer.

Please understand that my questions are not intended to cast doubt on your knowledge or expertise. For me to feel that I have some sense of control over my situation, I want to gain as much knowledge as possible so that I can make informed decisions. I want to know enough that we can make decisions together about the course of action we take. Please understand that if we choose the wrong option for treatment, I am the one who will die, not you. You may feel a genuine sense of loss but I will be dead.

Please understand that my desire to seek a second opinion doesn’t mean that I don’t like you or trust you. In a way, I don't really even consider it a second opinion. I believe your diagnosis and think it would be good to take things to the next level of specialty.

When I ask questions about how many surgeries of this type you perform and how frequently, it doesn’t mean I think you are not competent. Even if you have less experience dealing specifically with my exact type, stage, and grade of bladder cancer than other doctors, you may very well be much more highly skilled than they are.

If you were planning to build a house on a cliff, would you most likely go with a construction company that has a lot of experience building houses on cliffs, is specifically focused on the science and engineering of cliff building, and has an excellent track record or a company that builds on the plains but has built a few houses on cliffs but done an excellent job?

A major bladder cancer center may come to the exact same conclusion with regard to diagnosis and treatment. I may decide to have you do the treatment once things are confirmed. I see no good reason to travel far from home on a weekly basis if we're just talking about BCG or Mytomicin-C treatments.

The same way that my general practitioner pointed me to you when symptoms indicated that I needed someone with your expertise in urology, my hope is that you can help me find the best option available for someone with a laser focus on bladder cancer. As my GP covers all things in general, you cover all things urological. I now think I need someone who covers all things related specifically to bladder cancer. It is simply a matter of focus and specialties within specialties until I reach the lowest level of focus.

If a family member or close friend told you of this same diagnosis, what advice would you give them? Where would you send them to increase their probability of success?

Thanks for your understanding and for discovering my bladder cancer so we can try to beat it before it is too late.

Sincerely,

Your grateful patient.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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