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  • Questions from a BC beginner…..

    Posted by mikekc2kc on April 5, 2009 at 2:30 pm

    Hi all, I am new to this world, and have many questions….. I am a 58 year old male, with invasive BC, that has not penetrated into the bladder muscle. My cat scan came out clear of any other cancer. My bladder was 80% covered with tumors. I had my second TUR 3 weeks ago, and am wondering when/if my bladder will begin to work normally again. The Doc. said that he was able to remove all of the cancer, (3 1/2 hour surgery) and that i should feel better every day.

    I have to void about every 1 – 1 1/2 hours, day and night. The last few days I have begun to notice dark debris in my urine. am I right to assume that this might be scabs resulting from the resection? Will my bladder begin to hold more urine soon? should I be trying to stretch my bladder by holding my urine as long as possible?

    I am scheduled for another look and possible TUR on April 20, and then BCH for 6 weeks, starting one month later. I am worried that I ma not be able to hold the BCH for the required time, and thus not be able to benefit from this treatment.

    The Doc says that I have less thatn a 50% chance of having my bladder in 5 years. What are the chances that this cancer will return and spread? Chould I be considering RC now?

    I am sure that there are many more questions that I should be asking….. thanks to anyone willing to offer advice.

    mikekc2kc replied 15 years, 10 months ago 6 Members · 25 Replies
  • 25 Replies
  • Mikekc2kc's avatar

    Mikekc2kc

    Member
    April 14, 2009 at 12:30 pm

    Well, now I just feel silly. Dr. Stephen Campbell at the Cleveland Clinic is in my network….. guess that this is a no brainer…

  • 's avatar

    Guest
    April 13, 2009 at 11:17 pm

    Thats great…i love Dr. Campbell…many here have had their surgeries done by him
    http://my.clevelandclinic.org/staff_directory/7/Staff_6257.aspx
    Pat

  • 's avatar

    Guest
    April 13, 2009 at 10:42 pm

    John,
    Not sure i would go with an oncologist for second opinion. I would want a bladder cancer uro/surgeon. And i don’t know what insurance you have or how far you can travel to be in network….Is Memorial Sloan in network?..or Cleveland Clinic? Maybe all this is a moot point anyway…you have a very good doctor who was trained by the best and you’re at a hospital that does deal with bladder cancer.
    And remember Stats are only as good as the surgeon and the hospital..take em with a grain of salt.
    My surgery was 4 l/2 hrs away at The Cleveland Clinic and i have been followed up here locally by a especially hard to get into Uro group (but i can just drop in and give urine samples if need be)…i also have an Oncologist which just depressed the heck out of me sitting in those waiting rooms with really sick people…i cried every appointment. Finally asked my Internist if he would follow up on the blood work which is all my Oncologist was doing anyway. My follow up CT scans, chest x-rays I do here and have them sent to Cleveland for additional confirmation of pathology. They’ve made a couple of mistakes locally reading them as they are not familiar with an Indiana Pouch…one pathologist said i had gallstones……NOPE….just didn’t know what he was looking at. And Cleveland was very quick to let me know i was just fine.
    Pat

  • Mikekc2kc's avatar

    Mikekc2kc

    Member
    April 13, 2009 at 10:36 pm

    Well, now I just feel silly. Dr. Stephen Campbell at the Cleveland Clinic is in my network….. guess that this is a no brainer…

  • Mikekc2kc's avatar

    Mikekc2kc

    Member
    April 13, 2009 at 10:19 pm

    Thanks T.R. and thanks again to Pat and all others….. with the return of my energy level, I have carelessly entered into the dark and dangerous world of insurance coverage roulett. Words that don’t mean what Webster thinks they mean, (maximum out of pocket???) and a complete new vocabulary. Too bad that there is so much at stake.

    My insurance co. will only pay $25 for an “out of network” 2nd opinion. There is however, an in network local cancer treatment center, (Hahne Center In DuBois Pa.) that seems competent. Dr. Carmine Marchioli is the oncologist there. I will find out how many bladder patients they/he are treating, and perhaps use them for a second opinion. Plan B is to search the country for the best “in network” bladder cancer Doc, or find out what a 2nd opinion costs, and just bite the bullet and pay. I will also check out the other treatment possibilities in the Pittsburgh area.

    I am very comfortable with Dr. Huang at UPMC. He was a “fellow” at UC Norris, has published much in this area, and made many presentations…. His resume went on for pages, I didn’t really understand all of it, but it seemed impressive. He is happy for me to have a 2nd opinion.

    As I see it, you don’t know what you don’t know. My case may be open and shut… nothing to talk about, no questionable options. My Doc. has given me the stats, and I have found more stats here…. It seems pretty straight forward, but how would I know.

    This line of thinking brings up another disturbing fact….. 10 year stats….. early RC = 78% survival, trying to save the bladder first, then RC = 64% survival. Not as good as I first thought. My Doc. says that best survival with RC, but still chance to save the bladder and have no recurrence. Not an easy thing to get into perspective.

    Oh well, I guess that it is a process. Thanks again, John

  • tr1492's avatar

    tr1492

    Member
    April 13, 2009 at 9:05 pm

    Pat – I totally agree with you – John – if you have the desire and would feel more comfortable going to one of the major treatment facilities for bladder cancer then do it. If we would have been more educated at the onset of my father’s dx, we would have pushed him to do the same thing and head to Cleveland. I was just throwing the option out there. I am currently seeing (my father-in-law also has bladder cancer and his surgery and treatment was done at Duke and he lives 4 hours away) how difficult it can be to get to appointments and just to deal with all the little (that can turn big) things that happen with thise disease. When something seemed off with my dad – he called his uro or onc – my FIL calls his GP(which I do not agree with) b/c the other 2 are so far away and he can’t just pop in to see them.

    The main thing is to get the care that you feel most comfortable with – whether it is across the street or across the country. And to be educated so you know what you are getting and that there are options out there.

  • 's avatar

    Guest
    April 13, 2009 at 6:52 pm

    TR….it is possible to get second opinions or even surgery out of town when you have a complicated case or perhaps just want the best of the best in bladder cancer. Follow up can be done close to home. The larger cancer and Urology centers probably have 60% of their patients from out of town.
    JC is with a very good uro who probably would not have a problem with him getting another opinion or even doing surgery somewhere else should it come to that.
    I’m so sorry to hear your father lost his battle with this very sneaky cancer.
    Pat

  • tr1492's avatar

    tr1492

    Member
    April 13, 2009 at 4:14 pm

    John,

    I am originally from Pittsburgh and my father recently passed away from Bladder cancer in the area. Everyone on the board is right about JH and Cleveland Clinic. Since my dad was treated in Pittsburgh, however, I wanted to let you know who his doctors were and that we were happy with them. My father was treated at AGH.

    His urologist/surgeon was suggested to him by a physician in the area after the initial problem was discovered by a local urologist. Dr. Jeffrey Cohen was very good and had my father’s complete trust. He was straight with him and was very good in delivering results/news etc.

    His oncologist was Dr. Dilabh Monga. She was extremely caring and everyone in the office was just wonderful. She even made time to call me (I live in NC) and explain the diagnosis/prognosis when the cancer invaded my father’s bones.

    Again – like everyone else has said – you have very good options in Cleveland and in MD – but I wanted you to know about my dad’s team so you had another option in Pittsburgh. Some people – like my dad – choose to stay closer to home for treatment.

    I hope this helps and please let me know if you have any questions.

    T.R.

  • Mikekc2kc's avatar

    Mikekc2kc

    Member
    April 13, 2009 at 12:10 am

    Thanks for the encouragement… I believe that humor is a large part of my arsenal in this struggle.

  • gkline's avatar

    gkline

    Member
    April 10, 2009 at 3:08 pm

    I like the LOL! You certainly have the right attitude for this club. I used to think that LOL meant “Lots of Luck”.
    After having had 2 Cystoscope robotic search and destroy missions and then the “Remove and Replace” (as we car guys call it) I know where you are.
    Keep in contact with this group. They know what they are talking about! Much more than this writer.
    It is important to know that this Cancer can be beat and that good attitude is all important for recovery.
    We are with you.
    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • Mikekc2kc's avatar

    Mikekc2kc

    Member
    April 6, 2009 at 10:01 pm

    It seems that my bladder is very disappointed with the treatment so far, and has joined up with my urethra to form a complaint committee. We have had meetings, and I am sorry to say that I had to play the “boss” card. I told them to “Man up”, and get with the program, or they are out of here…… LOL

  • 's avatar

    Guest
    April 6, 2009 at 9:40 pm

    Yep…what it means is that Hopkins has state of the art pathology whereas many places do not…which is why i am such a harpy on institutions and surgeons who get enough tissue for staging.
    Your doc is doing the right thing with another TURB…its hard enough with one tumor to get all the margins and prevent seeding. I can’t imagine what your poor bladder is going through.:S
    Pat

  • Mikekc2kc's avatar

    Mikekc2kc

    Member
    April 6, 2009 at 6:21 pm

    Thanks, you are awesome… I am not sure what “overstaged” means. I read the article, and it seems to me that their conclusion is that there are/were many false positives for lymphovascular invasion, and that they used a different type of dye, or method of dying (sp?) Is this your take from this article?

    I am inclined to let Dr. Huang do the 3rd TURB….. He said that after a few hours of scraping, the bladder was so irritated and swollen that they couldn’t be sure to have gotten every last bit of the cancer.

    I plan to contact the Cleveland Clinic for a second opinion, let them look at the reports and slides, and see if they need to take a look.

    Thanks again for the research.

  • Mikekc2kc's avatar

    Mikekc2kc

    Member
    April 6, 2009 at 5:38 pm

    Thank you Pat, Jack, and Mike.

    Yes, the 2nd report is from UPMC

    I believe that my first TURB was just to collect samples, as my first Dr. felt that the bladder was not salvageable, and most of the tumors were still present at the 2nd TURB.

    I am scheduled for a 3rd TURB on April 20 at UPMC

    I see that some things are in the report are definite, and confirmed by a 2nd Dr., and some are suspicious. Is this normal in these reports?

    Thanks for helping with my education, I am starting to understand some of this, but I find much of this a bit depressing. Head in the sand feels better, but I am guessing that educated choices will get a better result.

    John

  • 's avatar

    Guest
    April 6, 2009 at 4:41 pm

    hmmmm…suspicious for…………” When ambiguous terminology is used, p. 20 of the CS manual indicates that “suspicious for” should be handled as involvement of the stated organ or structure” read that from a pathologists handbook. Thats about as ambiguous as you can get huh? Also found an article from Johns Hopkins which says that “suspicious for lymphovascular invasion” may be overstaged.

    http://www.ncbi.nlm.nih.gov/pubmed/2408038?dopt=Abstract
    Anyway what i think all of this means is that it is of the utmost importance that you have a top notch pathology department along with a top notch surgeon that gets enough of a sample. We often just think of the surgeon but overlook pathology.
    I’m not sure but if it were me i would be looking into that third TURB by a third opinion top center like Cleveland or Hopkins or Memorial Sloan. But thats me and you have to be comfortable with what you’ve chosen but you don’t have to be obligated to your present institution. They understand second and third opinions.
    I hope i’m not being negative here…i don’t mean to be. Yours seems to be a complicated case and i just truly want you to have the best care.
    Pat

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