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Major bladder cancer hospital is NOT OPTIONAL!
To all newly diagnosed folks with bladder cancer,
I need to make a point of clarification regarding treatment plans. I posted the flowchart of bladder cancer treatment for everyone but it is not clear enough that the line I have that goes from “Bladder Cancer diagnosis confirmed” to “Get referral to Major Bladder Cancer center” is NOT OPTIONAL if you have high grade!!! If your urologist did not say you have low grade, then it is high.
For those who have not yet seen the treatment guidelines, here is the link: Bladder Treatment Guide for Patients
People on this site tend to push hard on folks to get to the top hospitals and top doctors right after diagnosis. Let me explain why that is. People who don’t do that wind up with severe complications or dead much more often than those that do. I am sure that if the folks who died from bladder cancer because they were understaged or because they got the wrong treatment or because their surgeon screwed up doing the radical cystectomy could, they would post here and tell you not to repeat their mistake. Some lessons should really be learned from the experiences of others and not your own experience. I am telling you as someone who has seen and heard enough about the complications and deaths that happened to people who said “My urologist is really good and my local hospital is just fine.” Unless you live next to a major bladder cancer center, it is NOT fine. Think what you want but you will be wrong.
Are there complications that occur from the top surgeons and the top hospitals? Sure, but WAY less often.
There has been enough research on this subject that shows this to be true, and if you don’t believe my very common sense statement that “Doctors who treat a very specific condition day in and day out are better at it than those who don’t”, feel free to do the research. Maybe some of my colleagues on this site would like to post the links to the research, but really this is common sense.
If you are in a situation where you need a radical cystectomy, then get to the best surgeon you can at the best hospital. Don’t know which one that is? Ask Pat (Patricia). She’s done years and years of research on this and is happy to help you find the right doctor with the right experience. If you are in Canada, ask Jack (Moonerj).
You want somebody who is doing these every week. If your local urologist says he/she does about 10 a year or more, say thanks very much but I’m going to get a surgeon who does 60 to 100 or more a year. Someone who does more has come across more complications and more variables than folks who do less. They know how to course correct.
This is a matter of life and death. Not mine, yours! Your life is in your hands. Don’t have a local urologist do your surgery. He/she can be the nicest person in the world. That doesn’t matter when you are under anesthesia. Experience matters. How’s your urologist going to get that experience if you don’t let them “practice” on you? Who cares? I don’t care and neither should you. You should care about how you can get the very best treatment possible with the highest probability of success.
I profit in no way by sending you to a top bladder cancer center. I have nothing to gain. I’m not selling anything. Think about it!
Too many people have ignored this advice and have wound up with serious complications or dead. This is an absolutely stupid, needless outcome. PLEASE do not let this happen to you.
The doctors and pathologists at major bladder cancer centers deal with bladder cancer on a daily basis. It’s what they specialize in. They are better at it and it shows.
If you are diagnosed with high grade bladder cancer, get your slides, get the CDs of your scans, get the reports from the hospital and your urologist and get yourself to a major bladder cancer center right now.
I (and others on this site who repeatedly tell newly diagnosed folks the same thing) do this because we want YOU to live. We want YOU to avoid complications. If you choose to continue treatment with your local urologist when you have a high grade diagnosis, it is like playing Russian Roulette with 5 bullets and only one empty chamber.
Plenty of folks have been lucky, but plenty have not been and they aren’t here to be able to tell you that so I am.
Do we get anything out of it when you do go to a top cancer center for treatment? Yes, we get the feeling of joy that comes over us when we read of your continued great progress. Do we lose anything when folks don’t listen and then run into complications or death? Yes, we grind our teeth and we spit and cuss and our hearts break a little each time, and sometimes we even cry, because it didn’t have to happen and we tried and tried and tried to warn them. There is no satisfaction in “I told you so”. None whatsoever. Only sadness.
PLEEEEEEEEEEEEEEEEEEEAAAAAAAAAAAAAAAAASSSSSSEEEEE, please, please, please, please take heed of this advice. We want you around for many more years and we want you coming back to this site to tell others how you are doing and how you made it from being newly diagnosed to being cancer free for years.
I am cancer free for one year and six months now. I went to a major cancer center for treatment. I went to two just to be absolutely sure of my diagnosis and treatment plan. I want you to be saying the same thing a year and half from now.
Sometimes you can do everything right and things still go wrong. However, doesn’t choosing the path of diagnosis confirmation and treatment that offers the highest probability of success just make sense to you?
I know that your head may be spinning right now because you are newly diagnosed, but everything I’ve said here makes sense. It’s reasonable and it is backed by study after study (and quite enough personal experience on the positive and negative side). I don’t want anymore negative side experience…
Mike
PS: While the above was specifically written with regard to having a radical cystectomy, it still does apply for intitial TURBT, follow up TURBT, and confirmation of any diagnosis of bladder cancer.
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 system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.