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  • Surgery questions

    Posted by DannieC on November 18, 2016 at 3:36 am

    I was diagnosed in 2008. I have had tumors removed and gone through three kinds of chemo. Now the cancer is in my prostate as well. I have two choices neobladder or osteomy bag. Looking for some.answers on what the best choice is for me. I’m 53 I was diagnosed at 45. I’m a tree trimmer, I’ve been climbing for 34 years. I am very active. Looking for men my age that have an active lifestyle like mine to get there thoughts on the two proceedures. Do you feel you made the right choice with the one you chose. Thanks Dan C.

    Jmitchell418 replied 7 years, 9 months ago 6 Members · 9 Replies
  • 9 Replies
  • Jmitchell418

    Member
    February 12, 2017 at 4:31 pm

    DannieC,

    I am 6 months post radical cystoprostatectomy with an ileal conduit. I went through all the same research and decided that the IC was the best choice for me. I don’t have a desk job and I’m moderately active all day climbing ladders and such. I have had no issues with the IC in doing anything I want to do. I have also had no leaks and regularly get 1 week out of each appliance. I spend only about 20 minutes once a week in changing the appliance.

    I chose the IC for a few reasons. I didn’t want to make a decision that best suited me now at 45 years of age that made life more challenging as I get older. The IC can be maintained by a caregiver if that’s where my journey takes me. More importantly, I chose the IC because for me, I saw it as the quickest way to adjust to a new normal and get on with life. I knew, personally, that I would struggle with the mental fortitude to train a neo bladder. 6 months later, I have no regrets.

    Best of luck to you.


    45YO male
    11/30/2015 Left nephrectomy
    2/17/2016 left ureterectomy
    8/10/2016 cyctoprostatectomy w/ileal conduit diversion
    Cancer free since!
  • DannieC

    Member
    November 21, 2016 at 5:32 pm

    Thank you! Gkline. I appreciate your response. I have a lot more research ahead of me, but this helps. Thanks again!

  • gkline

    Member
    November 21, 2016 at 5:04 pm

    Dannie
    I was 53 when I was diagnosed with bc. I was quite active (skier,golfer, auto racer)
    I was given the three choices and chose a neo because it offered me as close to a normal life as possible. The performed the usual tests and I was told the neo was the #1 option, but that once they were in there, they would determine what I eventually got. It was a little disappointing to be marked for a colostomy port (just in case)

    Well, I have a neo. And I had a capable surgeon who did a fine job and the medical staff was vigilent about not getting an infection ( A REALLY BIG DEAL )
    I followed their rules and recovered quite well after 1 1/2 months at home.
    While no procedure is perfect, and I still have some incontinence issues, I am happy with my outcome. I am now 8 years out and still doing everything I always did before.

    Do your research and find the best surgeon that has done HUNDREDS of procedures. And live with your choice…. Have no buyers remorse. All of the choices have their niggling downsides and they have to be overcome.

    But if I had to do it again……. I’d get a neo all over again.

    George

    Best of luck


    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]

  • DannieC

    Member
    November 19, 2016 at 6:27 pm

    Thank you Cynthia, I see one of the main concerns, seems to be the surgeon. I will be checking his experience out monday. I have accepted my journey, but I am afraid I might make the wrong choice. You have been very helpful in guiding me in some further research. Thanks again to you and to all who have answered my call for help.

  • cynthia

    Administrator
    November 19, 2016 at 6:14 pm

    Dannie welcome to our forum but sorry you need to be here. I have an Indiana and I am not sure what your surgeon has against it. Doing what I do I talk to a lot of the top urologists and I do know that it depends on what you do the most of a lot of times. I talked to three of the top Urological Surgeon’s in the country when I had my RC done. I knew I wanted an Indiana pouch if possible a neo was not possible because of cancer spread to the ureathia and I did not wish to have an external applicance. Having a continent diversion was important to me as I was very active if not as active as you are. The first surgeon did not do Indiana’s but would do one if I insisted, the other two had had a lot of luck with them and would do one unless they found something unforeseen during surgery. I chose the one that did the highest volume of RC’s and as an added bonus he was someone I liked and trusted. Bottom line what every diversion you have the surgeon needs to do a high volume of them.
    My experience with the Indiana has been great it is contenent and I catheratise about every four hours. I can honestly say that it has never kept me from doing what ever I wish to do. I have hiked, danced, snorkeled and lived life for ten years with it. At first like the neo it takes time to “train it” but once that was done it has been fine. I just have to plan to have a disposable catheter with me while out but that is what pockets are for right? If you have specific questions please ask I would be happy to answer.
    We have a user I want to post to you but we do not seem to have his correct email address he check in every few days so I am sure you will hear from him soon as he checks in regularly. He has a neo is a business owner and race care driver.
    We have seen mountain climbers, marathon runners and everything in between with all three diversions. People adjust and adapt and that is an important piece of this puzzle another is the skill of the surgeon with the type of diversion they have done.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • DannieC

    Member
    November 19, 2016 at 1:50 am

    After reading the article, I see I have 3 choices. I said only 2 because the surgeon I have said he likes the Indiana pouch the least. But im the one who has to deal with it, not him. So if there is anyone out there willing to share I would highly appreciate it. I would like input on all 3. Please remember my first post of my life style. Looking forward to hearing from as many as possible. I’m scheduled for surgery January 23rd 2017. Thanks in advance.

  • DannieC

    Member
    November 19, 2016 at 12:15 am

    Thank you for the info. I’m trying to get as much as possible to make the best educated decision I can.

  • Alan

    Member
    November 18, 2016 at 11:36 pm

    Welcome Dannie and glad you found the forum. Sara Anne has given some good comments and while I have not had a RC, there should be some reading and responding once they see your thread. I am adding a quick discussion on diffrent diversions from the Cleveland Clinic that is a good start: http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

    Keep checking and posting.


    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.
  • sara.anne

    Member
    November 18, 2016 at 3:26 pm

    Well, you are facing some important decisions. I know that the guys will be chiming in with their opinions. I am female and have not had an RC, but have been moderating here for a long time, so can send on some second hand information!
    :laugh:

    As you probably know, this is MAJOR surgery, and there is quite a long recovery and training time. At your age, and in your physical condition, my gut feeling is that you should seriously consider the neo. The most important thing is that you have a surgeon who is VERY EXPERIENCED in this procedure….meaning someone who does several of these a week, not several a year. This is critical to your success.

    Sometimes, when the surgeon is actually into the operation, it becomes apparent that the pre-selected option will not work, and the default is the ileal condiut.

    There are many men who have been on the Forum who have a neobladder and do such things as scuba diving and driving race cars! They report that a really “tough” attitude helps!

    Good luck to you

    Sara Anne


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

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