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Major bladder cancer hospital is NOT OPTIONAL!

9 years 5 months ago #31230 by Patricia
Lori..the lab at the hospital can prepare and package your original slides at almost a days notice and your CT scan is on a Disc and readily available with your report. You just have to call them and tell them when you need them for your second opinion and they will have them ready for you to pick up. All your records are yours. You just have to sign for them. I would hand carry them. Thats what i did. Really they are very accomodating. You don't even have to contact your uro..just the hospital where it was done.
pat

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9 years 5 months ago #31229 by Moonerj
Hi Lori
Yes you take all your records and a copy of your pathology slides to the teaching or cancer hospital.(Most Labs will courier the sides to the cancer hospital) IF your current slides do have enough margins to give the 2nd opinion Uro and pathologist confidence in making a proper analysis, a Turbt will not be necessary as was my case. But if not the proper margins then a Turbt would be necessary.
You are going for the 2nd opinion to insure your diagnosis is correct and listen to another Uro's opinion regarding going forward.
Just trying to assist you in understanding, and trust me I know how difficult this is for you. But it is better to get this done and out of the way, so you can fight this disease with confidence in your medical team.
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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9 years 5 months ago - 9 years 5 months ago #31226 by LoriK
Hi. Me, Lori, again! Just read your blogs on Major Bladder Cancer Hospital is Not Optional and have a question or two. Will the 2nd opinion dr. that is at a Univ. Hosp. need to do a TURBT? Do I bring my current medical records? If so, what if the pathologist was incorrect and under staged or some other mistake. (I read where under staging is common) If they are just reading what my current dr. puts in my chart then what is the use?? Thanks - LORI
(I am T1, G3) You guys are the best and I hardly know you. Thank you.

Age: 52
DX on 2.18.10
T1, G3

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9 years 5 months ago #31225 by Moonerj
Everything Mike has said is right on the money. Even with TA low grade, a 2nd opinion at major cancer hospital for your pathology slides is a good idea. I listened to the people on this site and am forever grateful. Sure helped me sleep at night knowing I was indeed noninvasive TA Low Grade.
If your local Uro gets upset at you getting a 2nd opinion at a major cancer hospital or teaching hospital, then you are with the wrong Uro!
Mike, thanks for posting such vital information.
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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9 years 5 months ago #31223 by Humpy
I am living proof.

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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9 years 5 months ago - 9 years 3 months ago #31222 by mmc
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...
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