• Posted by rome91 on June 19, 2020 at 1:09 pm

    Hello l was diagnosed 2weeks ago with stage 3 bladder cancer and 2 lymph node around my pelvic showing cancer I really don’t know what is next but hoping for the best. I had a lemon size tumor removed TURBT in bladder but not completely for fear of penetrating bladder wall and l am still recovering. My urologist stated chemo and radiation maybe needed but l thinking about getting a second opinion before l meet with oncologist (lost and scare). I also was told the urothelial tumor appeared dried up and very little blood When removed
    My mind is all over the place right now
    Don’t know what to expect l am only 58years old/male

    Thanks for listening and stay safe and well

    joea73 replied 3 years, 10 months ago 6 Members · 9 Replies
  • 9 Replies
  • joea73

    Member
    August 25, 2020 at 7:10 pm

    Congrats !!

  • Golfer

    Member
    August 21, 2020 at 3:29 am

    My husband went to Moffitt and we were extremely pleased with their health care.

    His Orlando urolgist forwarded his records, and the same day Moffitt phoned and made an appointment for him to see Dr Roger Li, one of the surgeons.
    We never felt rushed in any of our appointments, and everything was fully explained.
    After 6 weeks of chemo, there was a 6 week break before Dr Li performed a studer neo-bladder.
    He also removed 16 pelvic lymph nodes in the 8 hour surgery on 2nd March.
    He spent 7 days in hospital, the last 2 was because his electrolytes were very low, and so could not be discharged.
    A home help nurse was arranged for him until all his bags had been removed.

    He has been committed to self catheterizing as instructed by Dr Li, and has not had any problems.
    At first he had to void every 2 hours day and night, but now is up to 4.5 hours.
    He is 69 years old, and of course a golfer, he really wanted the neo-bladder over the urostomy bag.

    We just returned from seeing his family, and they all agreed that he now looks so well you would never know he had been through chemo and a major operation.

    We are very thankful to the staff at Moffitt.

  • Ckfun

    Member
    August 7, 2020 at 8:05 pm

    Hello, Rome,
    How did it go at Moffitt?
    My husband has a urachal adenocarcinomand is seeing Dr. Wade Sexton at Moffit on August 18 to discuss treatment options.
    Thank you.

  • sara.anne

    Member
    July 7, 2020 at 4:43 pm

    Yes, radical cystectomy would be the logical next step after chemo for stage 3 bladder cancer. It will be interesting to hear the recommendations from Moffitt.

    Patients who have had bladder removal live full lives with whichever diversion they choose. While it would be nice to keep your bladder, when it is a choice between your bladder or your life, I know which I would choose!!

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • Rome91

    Member
    July 7, 2020 at 2:16 pm

    Hello everyone

    My first doctor recommended MVAC chemo then it’s unclear whether bladder will be removed. Is the bladder recommended for removal on stage 3 after chemo?

    I have a second opinion at Moffitt which l hope he may recommend treatment on saving my bladder.
    Thanks

  • Alan

    Member
    June 21, 2020 at 12:01 am

    Moffitt what little I know has a good reputation.


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • Rome91

    Member
    June 20, 2020 at 1:06 pm

    Thanks You and Good Morning

    I have an Oncology appointment June 29 with Malcolm Randall Va in Gainesville But I made an appointment July 10 with Dr. Roger Li at Moffitt Cancer center in Tampa
    I really don’t know what to expect but with Dr. Li appointment l will be more informed from my June 29 consult. I now have very little pain since the TURBT at the Va Hospital On June1
    My concern is that they could not remove all the lemon size tumor because of muscle invasions and 2 lymph nodes near pelvic

    Thanks Again for everyone help

  • sara.anne

    Member
    June 19, 2020 at 4:26 pm

    Sorry to hear your diagnosis. I will second everything that Alan said…..I would especially recommend a second opinion at a place that sees a LOT of bladder cancer cases such as a medical school or nationally recognized center of excellence such as MD Anderson, Memorial Sloan Kettering, Johns-Hopkins…If you let us know where you live perhaps someone will have a suggestion. I have not been in the situation you are in, but my urologist told me at the start that if it ever came time for a radical cystectomy he would INSIST that I seek a second opinion.

    I would also second Alan’s comment about radiation. Very often in situations such as yours chemotherapy is done prior to surgery, but radiation can do damage. Also you do want a surgeon who does MANY RCs a year. Many are only comfortable with the simplest procedure which may not be the best for you.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • Alan

    Member
    June 19, 2020 at 2:17 pm

    Welcome Rome91,

    All questions are welcome and there are many here that have “been there and done that”. Keep asking away as someone will have some of that to add.

    While your diagnosis is serious keep in mind this still beatable and treatable disease. Stage 3 means you want to attacking expeditiously, especially with lymph node involvement. The chemo certainly makes sense, radiation not quite as much. With stage 3, I am assuming all have talked about your need for a cystectomy. Radiation can sometimes damage tissues needed for reconstruction on a urinary diversion. Thus, a second opinion is sometimes good for fresh eyes, peace of mind and maybe new ideas. However, you do want to get going on this.

    I am attaching a link….just copy and paste into your browser on the pros and cons of the 3diversions. On that subject. When you settle on a surgeon make sure you pick one that does many a year (25-35+ a year).
    Some will also have a preferred because that is all they know….so research and questions are vital. Most people that have gone through this are happy with their choices. See: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction–diversion


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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