9 years 2 weeks ago - 7 years 5 months ago#33774by mmc
I am re-posting this because the blog section is no longer active so the links I had in the original post were not functioning anymore....
For the newly diagnosed, I put together a 'map of the journey' for bladder cancer treatment.
A lot of folks have printed this out and used it as a discussion tool with their doctor. It has been reviewed by my surgeon and others and their feedback has been incorporated.
The pathways in the flowchart represent my understanding of the recommended treatments and is a consolidation of my experience and knowledge, research I've done into bladder cancer, reviews by doctors, and reviews by other patients/survivors/members of this site.
<strong><em>The purpose of this chart is to <em>assist</em> you in educating yourself so you have informed discussions with your doctor(s). Use this along with a list of your own questions. Write everything down and keep good notes. Don't rely on memory when talking to your doctor. You are your own best advocate. </em>
(PLEASE NOTE THAT THIS FLOW CHART IS THE WORK OF THE AUTHOR AND NOT THE WORK OF THE ABLCS AND IT IS NOT ENDORSED BY THE ABLCS.)
Hang in there Andy. March 2nd will be here before you know it.
Dr Hafez will take good care of you. God Bless him. He is a wonderful man.
I really made him work. I only had about half the intenstien available to make my Neobladder out of. He said a younger or less experienced doctor would have said, "give him a bag, and sew him up." This may sound silly, but I really look forward to my follow up appointments. I see him again in March for my nine month follow up, a month late. All the best, you are in great hands.
And yes, your cancer is going down, big time. Jim
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
9 years 7 months ago - 9 years 7 months ago#30413by Andy
Hey Mike -
It sure has been useful. My doc at UM really liked it. Tuesday I go in for all the pre-op appointments and will spread it around there also. March 2nd is my surgery, at this point I just want to get it done!! Waiting is soooo stressful. Can't say I'm looking forward to it, but I sure am looking forward to getting on with my life. My cancer is going down!
9 years 7 months ago - 9 years 7 months ago#30412by mmc
This is just a note to keep this fresh.
I went back and edited some of my previous posts in this thread and modified the very first post in this thread to include the link to the blog page.
Whenever I make any updates to the flow chart (map), it will be maintained on the blog site so I'm just putting links in the other places to point there.
I did see that there have been over 11,000 hits on this page so that's pretty exciting.
Thanks to everyone who has given me feedback on the map! I'm very happy that people have been finding it useful and that it has helped them facilitate discussions with their doctor(s) about their treatment.
On the premise that it does depend on the center you are going to (and this was a concern to me), I had 3 second opinions from three different and unrelated centers in the Chicago Metro area and in my situation they were all in agreement that the only thing I should be doing was followup. The U of C followup schedule was the most agressive and I choose them to do the follow up. That seemed to be the safest thing I could do (not that I was nervous or concerned or anything like that ).