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  • newly diagnosed; where do I go from here?

    Posted by upnorth1414 on October 26, 2010 at 11:54 pm

    Hello everyone,

    I am 50 yr old male who used to smoke.

    I was recently diagnosed with bladder cancer.

    The final diagnosis was:

    High grade, deeplyinvasive Urothelial Carcinoma

    Tumor invades thick deep muscle bundles

    Foci suspsicious from lymphatic invasion

    Adjacent foci of highgrade Urothelial Carcinoma-in-Situ

    I am not even sure what I just typed here means.

    I’ve gone to see a Urulogist(Dr. Coogan at Rush Medical Center in Chicago) and he recommended the removal of my bladder, prostate and lymph nodes and having it replaced with a neo-bladder.

    I also went to see an onocologist that the Urologist recommended and even though he said chemo and radiation where an option, that bladder removal was the more promising treatment.

    I am going to see another Urologist for one more opinion, but was hoping if anyone out there can tell me if I am on the right track.

    Like anyone in this situation I feel that I am being pulled in a few different directions and quite honestly am not sure yet if this has all sunk in.

    Thanks in advance for your help.

    Joe

    Humpy replied 14 years, 3 months ago 9 Members · 29 Replies
  • 29 Replies
  • humpy's avatar

    humpy

    Member
    November 9, 2010 at 3:22 pm

    Hey KC, Good to hear from you again. 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
  • kcnorthstar's avatar

    kcnorthstar

    Member
    November 9, 2010 at 12:13 am

    Joe,
    I have not been on the site for a while and just came across your post. In 2006 I had neobladder surgery at the University of Chicago Hospital by Dr. Gary Steinberg. He is one of the best Uro-surgeons in the country. I am more than 4 years out with a neo and can tell you that my life now is exactly the same as before the surgery. Also, like you I live up north. My wife and I live by the Canadian border in Ely Minnesota. I would be glad to share my experiences with you about the surgery and answer any questionas you may have.

    KC Madsen


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

    Guest
    November 6, 2010 at 7:04 pm

    michael..i’ve just got to say in all my years of monitoring results from different institutions and uro/surgeons i swear i’ve never heard an unsuccessful neobladder story from IU Simon and Dr. Koch (Koch pouch) or Dr.Bihrle and that includes females. They’ve got a top secret going there and i wish they’d share.
    They successfully cured my son of testicular cancer..in fact created the cure…..i have enormous respect for their capabilites.
    pat

  • Michael305's avatar

    Michael305

    Member
    November 6, 2010 at 6:45 pm

    Hi Joe yes I had my surgery done at IU simon cancer center. My urologist is Michael Kock and I am so greatful to have had him do the procedure. I am currently back at work and sleeping about 7 hrs out of 9 with out having to use the restroom now but still needing to wear a pad at night to avoid leakage. I donot need to wear a pad during the day time but we are all not the same.

    My surgery was done on sept 3rd and so far so good. I hope the best for you and also please dont worry – you will be 100% after all is said and done. the recovery is the hardest part so walk walk walk and always drink that water. Make sure you ask how much liquids you can drink in a day because you do not want to over strain your new bladder.

    I will be more then glad to help you with any advice I can give you just like all the wonderful folks here. have a blessed day and look forward to your new life with no pain.

  • Upnorth1414's avatar

    Upnorth1414

    Member
    November 6, 2010 at 12:56 pm

    Hi Michael,

    Glad to hear things worked well for you. Though not my situation, everyone else’e story is very encouraging and supportive for me.

    Since you are so recent into this, I would really be happy to hear how you progress since I will be going in soon for the same procedure.

    May I ask where you had yours done?

    Thanks,

    Joe

  • Jj803's avatar

    Jj803

    Member
    October 31, 2010 at 4:22 pm

    Pat and Mike,

    I appreciate your kind comments. If my comments help or give solace to anyone, they are well worth the effort. Best wishes to you both,

    jj

  • Michael305's avatar

    Michael305

    Member
    October 31, 2010 at 2:21 am

    Joe I hope all goes well. I have a neo bladder and had my prostate removed as well. I am 1 month 1/2 since my surgery and am progressing very well. I return to work soon and also was told no need for chemo so its a born again thing you will be fine.

  • mmc's avatar

    mmc

    Member
    October 30, 2010 at 11:48 pm

    JJ,

    By the way just wanted to tell you how glad i am that you are posting here. Your knowledge is so very helpful. Thank you.

    I second that!!! Glad you’re posting here!

    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.
  • Jj803's avatar

    Jj803

    Member
    October 30, 2010 at 11:45 pm

    Glad to see that things turned out so favorably for you. I wonder of Dr. Herr’s comments don’t include restaging turbts as well. Many times the original turbt does not have smooth muscle at all or very little, so under-staging is a real problem, because it doesn’t include enough tissue. I think that even re-turbt for staging purposes at the major institutions reveals a significant # of under-staged tumors when a repeat or cystectomy is done. The numbers I have seen range from about 25-50% will be up-staged on a second turbt. This is most often in patients who had little or no muscle wall in the original. I believe that is why many now recommend a routine 2nd turbt for T1 patients who are considering bcg. By the same token, many T2 tumors also turn out to be understaged when cystectomy occurs. Turbt doesn’t sample the tissue outside the bladder so pathologically a higher stage cannot really be ruled out by turbt and the scanning studies are not sensitive and specific enough to detect all tumor that extend beyond the bladder wall. Best wishes,

    jj

  • 's avatar

    Guest
    October 30, 2010 at 11:34 pm

    Thanks jj..wow it sure makes you think doesn’t it? I have an article posted in here under Articles of Interest where Dr. Herr said that 75% of the slides he gets from other institutions or local hospitals are understaged . Thats an alful lot. In my case i had one tiny papillary tumor growing out of CIS and was determined T2. Now at my second TURB at MSK Dr. Herr got it all out of there including margins that were left but said to me (now this was 8 yrs ago) it will be back.
    I took my slides with me to USC/Norris, Indiana U, Cleveland Clinic and Mass General (wanted to hear what they had to say) They all recommended cystectomy except Mass General who wanted to do the chemo/radiation which wasn’t for me.
    My decision on Cleveland was based on the fact that i wanted an Indiana Pouch and MSK did not want to do that…so i was off and running to find an expert who did. As it turned out after the cystectomy my bladder was found to be cancer free with a few dysplasic cells floating around. All nodes clean.
    Just interesting.
    By the way just wanted to tell you how glad i am that you are posting here. Your knowledge is so very helpful. Thank you.
    pat

  • Jj803's avatar

    Jj803

    Member
    October 30, 2010 at 10:44 pm

    Pathology was just a difficult case. There was definitely viable tumor adjacent to bundles of smooth muscle, but probably different pathologists made different interpretations of the muscle. Since smooth muscle can be found in some areas in the lamina propria and makes up the walls of arteries, the decision is based upon the quantity and quality of the smooth muscle. I, too, had a 2nd turbt, but in this specimen there was definitely no muscle wall invasion and there was substantial smooth muscle to evaluate. Yet one month later at rc there was a very small area of invasion into the very superficial aspect of the muscle wall. Given the two events after the initial turbt, I have no idea whether the folks who thought the initial was muscle invasive were correct or if this occurred in the interim. My personal feeling is that the initial turbt was best interpreted as indeterminate but highly suggestive of muscle invasion which was one of the interpretations. I do not believe there was sufficient evidence to deem it muscle invasive, but too much uncertainty to say no invasion. It’s just a fluke that I even sought another pathology opinion (other than the ones that are routinely done as a part of a 2nd clinical opinion). I asked one of my partners what he thought about a particular area in terms of CIS and his response was he did not think what I asked about was CIS, but did think it might be muscle invasive. When he showed me what he was talking about, I did not think I could be absolutely sure either way and sent it to Hopkins. Reasons for differences in pathology interpretation are many, but usually occur in difficult cases in terms of interpretation. Then you deal with consulting pathologists who most likely look at the exact same thing and arrive at different conclusions, some are often much more aggressive in what they require in order to call something ca or in this case muscle invasive and others are much less so. It is a difficult line to walk, because, as a pathologist, you want the patient to have the most appropriate treatment without being over treated. In the case of muscle invasion vs not in the urinary bladder, this is a dramatic difference – huge surgery vs conservative treatment. This is one good reason to get a second opinion from someplace that does a lot of bladder ca, since it comes with a pathology opinion from a department that sees a lot of bladder ca. I bet that 95% of the time there is complete agreement, but if you are in that other 5% you then face who to believe and what to act on. For myself, I thought I would not be able to live without significantly second guessing myself, if I didn’t act as if it was the worst possible and give myself the best chance for a cure from that worst possible scenario. Hope this helps to explain the dilemma a bit better.

    jj

  • 's avatar

    Guest
    October 30, 2010 at 6:38 pm

    jj,
    very interesting that 3 top institutions known for bladder cancer could not agree on pathology. Was it the condition of the sample. Just wondering as when i went to MSK for second opinion i was told by Dr. Herr that my slide was not viable and second TURB needed to be done which he scheduled within 3 days. Now that pathology was not even questioned by USC/NOrris or Cleveland Clinic. Just curious.
    pat

  • Jj803's avatar

    Jj803

    Member
    October 30, 2010 at 5:41 pm

    Forgot to mention that I was at least pT1 on diagnosis, but there was a strong possibility, based on the histopathology of the initial turbt, that I had muscle invasion. I ended up with 2nd opinions from Vanderbilt Medical Center in Nashville, Tn and MD Anderson in Houston as well as pathology opinions from both of those as well as Johns Hopkins to try to clarify the muscle invasion picture. none agreed on that, so even though treatment recommendations from both MDA and VU were a trial of BCG, I chose to be more aggressive based on the high possibility of muscle invasion and had radical cystoprostatectomy with extended lymph node dissection and neobladder diversion. After the surgery, it was determined that I had pT2a (muscle invasive) bc with no nodal involvement or extension beyond the bladder and no tumor at margins in addition to a Gleason 6/10 multifocal, but small, prostate cancer (previously unsuspected). My post op course was textbook, home on day 6, foley out 3 weeks after discharge and immediate incontinence. Over the next several months I became continent day and night. Returned to work on a very limited basis and a non physically demanding job at weeks post op which was probably too soon for me. Tired easily and needed naps for a few weeks after going back. That was about 2.5 years ago and now I am very physically active for a 61 year old. Ride my bike most days totaling about 100-150 miles/week, lift weights, travel (including trip to Europe this summer) and pretty much do anything I want. I do plan some like fully emptying the neobladder before driving for any long distance, before bike rides and before strenuous physical activity. So the bottom line is that a high quality of life is available after cystectomy. By the way I had no complications post op and have had none since. At last check (June of this year) all tests are ok for bc and prostate ca recurrence so for now in the clear. Best wishes,

    jj

  • mmc's avatar

    mmc

    Member
    October 30, 2010 at 3:26 pm

    Joe,

    Forgot to mention that other than the couple items I mentioned earlier in the thread, I can do anything I could before. Golf is better because I don’t have to pee so often anymore. Got back to scuba diving last year and that was a blast. Have my season pass to Winter Park so I’m just waiting for opening day to hit the slopes.

    The moral of the story is: Even with some complications, life is great and you can do anything you could before (sometimes better).

    :)

    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.
  • Upnorth1414's avatar

    Upnorth1414

    Member
    October 30, 2010 at 2:48 pm

    HI JJ,

    Thanks from replying to my post so quickly.

    And thanks for the info your provided. Yes I will be visiting a second urolgist for an opinion and am exploring the option of visiting with one more oncologist for another opinion.

    Just curious…what route did yout end up taking after your diagnosis and how are you today.

    Thanks,

    Joe

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