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  • Major bladder cancer hospital is NOT OPTIONAL!

    Posted by mmc on April 4, 2010 at 7:02 pm

    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.
    replied 14 years, 10 months ago 8 Members · 17 Replies
  • 17 Replies
  • 's avatar

    Guest
    April 7, 2010 at 4:43 pm

    Maz…this is an older site but lists top hospitals in the NIH
    http://www.canceractive.com/cancer-active-page-link.aspx?n=435&Title=Centres%20of%20Excellence
    Apparently if in the UK you want a referral to The Royal Marsden
    http://www.royalmarsden.nhs.uk/rmh
    The NIH should be able to help you. I just know a recent mandate made in the UK was to refer all bladder cancer patients to major bladder cancer centers due to dismal results. I posted it somewhere here…i’ll find it.
    Pat

  • mmc's avatar

    mmc

    Member
    April 7, 2010 at 3:49 pm

    That’s OK maz. No offense taken at all. :) :)

    That’s why I put the smiley face in my original response.


    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.
  • maz's avatar

    maz

    Member
    April 7, 2010 at 3:23 pm

    :So sorry Mike please excuse me, not so good as expressing myself. Me neither, very insensitive of me. Apologies again.


    Dx-11/12/09 pTa G2
    Mitomycin C x6
  • mmc's avatar

    mmc

    Member
    April 7, 2010 at 3:13 pm

    Since things are different in the UK, I think somebody in the UK probably has to take that role. Some places are better than others and some doctors have more experience in specific types of surgeries.

    Someone just needs to do the research and share that information. Either that, or folks can post their experiences.

    As for “victim”, I don’t know because I have never been a victim and never will be a victim… :)

    Mike


    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.
  • maz's avatar

    maz

    Member
    April 7, 2010 at 2:24 pm

    :( I think you are all great & very lucky to have this advice for US & Canada, but is there anyone out there that can give the same advice/leads for us UK victims ??


    Dx-11/12/09 pTa G2
    Mitomycin C x6
  • kcnorthstar's avatar

    kcnorthstar

    Member
    April 7, 2010 at 12:50 am

    Mike,
    I just came across your post: MAJOR BLADDER CANCER HOSPITAL IS NOT AN OPTION. I must have missed it the other day. Thanks for posting that and trying so hard to drive that point home.
    I got a total of 5 opinions before I got my neobladder. I took the time to travel to Mayo in Minnesota and went to several major university hospitals in Chicago. I evetually picked The University of Chicago Hospital and all the time I took making that decision payed off big time. I hope everyone that is newly diagnosed reads your post and takes apropriate action. We have all been stressing that on this site, but I think your posting really conveys the message strongly.

    KC


    Age 59
    DX Jan 2006 – T1B G3
    RC – Neobladder June 2006
  • christine-springfield's avatar

    christine-springfield

    Member
    April 6, 2010 at 7:29 pm

    Mike,

    Thank you for sitting down and taking the time to put these posts together. Can’t tell you how many people just don’t seem to get that they are gambling with their LIVES when dealing with cancer… any kind… every kind.

    My next door neighbor and me and my husband’s best friend, Charlie, was diagnosed with cancer the same day I was. We stopped at his house on the way home from the cysto where the tumor was found and told him the news. We were quite shocked that he had also been to the doctor that day and diagnosed with lung cancer. I hauled ass to M.D. Anderson where I was treated by a wonderful team of bladder cancer specialists and I am here today. He chose to save 30 minutes of drive time and went to a hospital in College Station. We spent 6 months trying to talk him into joining us at M.D. Anderson. We could even car pool! No luck. He died 360 days after his diagnosis in a hospital bed in College Station. When I talked with him the night before he died, he had JUST (moments earlier) found out that his cancer was all over his body and that he was dying. I will NEVER forgive that hospital for keeping him in the dark about his cancer and I will never forget the fear in his eyes as he lay there dying. I don’t know that his cancer was curable from the beginning, but I do know that had he used the incredible resources available to him, he would not have suffered that shocking moment at the end.

    I’m helping one of my neighbors right now who was diagnosed around Thanksgiving with breast cancer. She’s 43 and works at that same damned hospital Charlie went to. She has chosen treatment there, too. We tried to talk her into going to M.D. Anderson, but had no luck. I hope it works out for her… I really do. She has a lot to lose. A husband, 3 kids, a lot of life ahead of her. Why, why, WHY don’t some people get the best possible treatment for cancer? I just don’t get it.

    Christine


    T3/G3 – Squamous Cell/Transitional Cell Carcinomas
    RC w/Studer Pouch 4/25/07
  • humpy's avatar

    humpy

    Member
    April 5, 2010 at 3:02 pm

    AT A GIRL!!!!!!!!!!!!!
    You will find,that it is very comforting,
    knowing you are getting the best care possible.
    Jim


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

    LoriK

    Member
    April 5, 2010 at 2:03 pm

    Just wanted to let you great people know that I have an appt. for a 2nd opinion with Dr. Raj Pruthi on April 29th. Dr. Pruthi is the doc. recommened by Pat. I think this is the right decision, I feel very good about it. Thank you for your help and we will be in touch soon as I seem to have an unlimited amount of questions and you seem to have an unlimited amount of wisdom and experience. LORI


    Age: 52
    DX on 2.18.10
    T1, G3
  • 's avatar

    Guest
    April 5, 2010 at 3:54 am

    Mike…i actually got knocked off the site while trying to get another link and forgot to add……and very important…many university centers are terrific….USC/Norris Keck School of Medicine, UCSF, U. of Pittsburg, Indiana U. where they invented the Koch pouch,the University of Chicago and on and on….i certainly did not mean to rule them out as i checked them out also and they were also all listed in the US News and World Report. And there are some terrific uro/surgeons who are not with a major bladder cancer center but are associated with a major hospital like Dr. Michael O’Donnell at the U. of Iowa and Dr. Soloway at the U. of Miami and more.
    I was just trying to give a hint as to how and where to look when confronted with this diagnosis..its a great starting point.
    As you know we have had many on this site with T1G3 who sucessfully have had no recurrence with BCG and also with Mitomycin
    C…….Warren is 8 yrs out without a recurrence….our dear old friend Rosemary is about that far out without recurrence and happens to see Dr. Pruthi in N.Carolina. It just requires due diligence and a great doctor.
    pat

  • mmc's avatar

    mmc

    Member
    April 5, 2010 at 1:54 am

    Right Pat. I didn’t say university hospital. That was Lori who mentioned Univ. Hospital.

    I said to ask you. You gave Lori a name already and she mentioned that she is going to get an appointment with the doc you named.

    Lori: Since you are going to doc that Pat mentioned, you should listen carefully to what they say. As Jack said, they will want a reTURB if they don’t see good margins all the way around. Often some is left and often not enough margins are obtained all the way around.

    Print that article about T1G3 and take it with you. Also take my flow chart. Use those two things to ask questions and get a good understanding of the risks/probabilities with BCG or RC. If it was T0, then I’d recommend BCG as the first course of action (but I’m not a doctor). I just don’t like the odds so much with T1G3 but I also tend to be very aggressive about treatment.

    When I had my CIS recurrence, I would have opted for RC even if it was still T0. In my case, it had gone from nothing seen in the cysto to T2 in weeks so I’m glad I got my bladder out.

    You are doing the right thing by going to the specialist.

    I wish you the absolute very best!

    Mike


    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.
  • 's avatar

    Guest
    April 5, 2010 at 12:32 am

    Just one caveat Mike..not all universitys are major bladder cancer centers…..some are but many are not. Case in point where i live..a major city but a dud when it comes to bladder cancer.
    One of the first things i did when diagnosed was go to US News and World Report for the top hospitals in the US and whittled it down to cancer and urology. Then i went to each of the sites and went into the urology department or Genitourolgy dept and read bio’s…if the main interest was prostate cancer…well on to the next bio. I went to the top cancer centers first and then the top urological centers. I picked Memorial Sloan for my second opinion because i could and i got the grand poobah of bladder cancer surgery Dr. Harry Herr to do my re-TURB. He saved my life. He got the remaining tumor out and the margins. This gave me some time to research reconstruction. Dr. Herr wanted to do a neobladder on me…i wanted an Indiana Pouch…we parted ways.
    I contacted Dr. Mark Schoenberg at Johns Hopkins #1 Uro hospital in the US..he was exceptionally helpful. He threw out names of many doctors specific to the Indiana and female patients. I went to see 7 of them in a 4 week period. They all knew one another. They all had great respect for one another and it was a difficult choice.
    Another resource is http://www.castleconnolly.com/
    you don’t have to subscribe..they will give you top docs in your area of expertise..just not all of them but it gives you a pretty good idea.
    Pat

  • 's avatar

    Guest
    April 5, 2010 at 12:01 am

    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

  • moonerj's avatar

    moonerj

    Member
    April 4, 2010 at 11:08 pm

    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
  • LoriK's avatar

    LoriK

    Member
    April 4, 2010 at 10:41 pm

    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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