• Posted by Grandmato3 on July 23, 2019 at 3:48 am

    I was diagnosed with bladder cancer back in March of this year and to me it was no big deal. I told the doctors that I would do what I had to do.

    I just recently finished my 12 weeks of chemo without many issues. My oncologist was terrific and did everything he could to make me comfortable during treatment.

    Now is the time to talk surgery. when I first saw my urologist and discussed my bladder cancer treatment and surgery, he told me that I would have new bladder made out of my intestines and it would be almost as if I had my own bladder. I was ok with that.

    Today I go meet the surgeon who is doing my surgery and he tells me that I do not have that option. I will either need a bag or learn to drain my urine through my belly button. Needless to say I am in shell shock. For the past 14 weeks I was thinking I was getting a new bladder and now I get a bag or a tube. Needless to say I’m already depressed and I am angry. This news is 10 times more difficult that my cancer diagnoses was.

    Just looking for some advise for those of you who have either devices and how you coped with the changes in your life.

    Thanks!

    AMG replied 4 years, 11 months ago 5 Members · 11 Replies
  • 11 Replies
  • AMG

    Member
    August 6, 2019 at 9:16 pm

    Hi Cynthia,

    My URO did prescribe the protocol but at the beginning I was in the bathroom every hour or sooner. It was awful not sleeping and spending all my time doing laundry, cleaning up my messes, and desperately trying to make it work. The problem for me was that after being removed from most of the tubes post surgery, I still couldn’t use a catheter because it just wouldn’t go in. After being told by a PA that I should try for 5 minutes each time, I lost my lid! The surgeon promptly fixed the problem by inserting a cath for 2 weeks to create the scar tissue for future catheterizing.
    At my 3 month follow-up, I ranted at the URO and let him know that the teaching hospital needed to help patients that couldn’t help themselves( arming them with lots of information and support). At my 6 month, the URO told me he had taken those words to heart and at my last appt. on Monday he let me know there is now a bladder support group at this hospital. I plan on attending the next session to see if it is all hype or something BC patients and survivors will really benefit from. If not my mouth starts opening again lol.
    Imerman’s Angels and Friends for Life Cancer Support set me up with individual mentors that had very similar surgeries. Those phone calls saved me from going to an awfully dark place. I will forever being in their debt.
    AMG

  • AMG

    Member
    August 6, 2019 at 8:56 pm

    Grandma to 3,

    Attutide wins the game! I wish you a hassle free recovery.

    AMG

  • cynthia

    Administrator
    August 6, 2019 at 6:20 pm

    Lee lee and AMG,

    First AMG I know some Uro’s use a training protocol following RC with both the Indiana and the Neo. Did your Uro have you use a training protocol? The one they had me do for my Indiana once I started catheterizing was every 2hrs the first week, 2 1/2 the second and so on until I could go 4 hrs. This was done I was told because you have to stretch the pouch when new. It was kind of like having a new baby for a while but I never had leakage.

    Lee lee,

    With my Indiana I wear what I wish form fitting or not, the diversion itself does not slow me down a bit. Lee you will adjust to whatever diversion you get and none are going to be without a learning curve and all have there pros and cons, only you know what your needs and sensitivity’s are. For me it came down to body image and the fact that I cant even wear a band aide without it taking the skin off if I have it on for more than an hour or so. I know there are non allergic tapes but I didn’t want to chance it. I would suggest you take a piece of paper and make two lists on for the bag another for the Indiana and do pros and cons, that might help clarify your thinking. Also even though most of us get the diversion we ask for there is a small chance that they might not be able to do it given your individual situation. Learn as much as you can and know that you will adjust as millions of others have and that you are not losing a bladder you are just choosing life.
    Ask all your questions we are here to answer them if we can.


    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
  • Leelee

    Member
    August 6, 2019 at 12:15 am

    Hi Cynthia,

    Wow you are amazing lady! … I admire you. So it sounds to me as if you tried TMT for a while before the decision to do RC was made? I am considering all options at this point and as crazy as it sounds, one day I feel I’m swaying one direction and the next day the other direction. I am terrified to make the wrong choice. A little about myself –I am 53 years old and a very active ,enthusiatic elementary school PE teacher. I am very petite ..4 foot 8 and 105 pds. and I tend to think the bag would not easily be concealed on my small frame? your thoughts? . (I typically wear form fitted clothes, not loose or baggy). Any more information you are willing to share and think would help me make the best choice/decision for me would be welcomed and greatly appreciated. I hope you had a wonderful time in Florida. I was born in Boston, grew up in Miami and live in Atlanta now. Be safe and THANK YOU !!!

  • Leelee

    Member
    August 5, 2019 at 11:52 pm

    AMG

    Thank you so much for your feedback. I am learning, weighing all the pros and cons & processing all this information and will soon be ready to make my decision. THANK YOU !!!!!

  • Grandmato3

    Member
    August 5, 2019 at 11:11 pm

    Well I finally had my surgery on the 1st of August. After 10 hours I woke up to having a bag. Disappointed to say the least but am thankful I am alive and cancer free. Getting adjusted to my new “bladder” and I am getting the feeling that once is all said and done I will adjust like so many other people.

    I have not actually talked to the doctor who performed my surgery. Am interested to know why it took 5 hours longer than he had planned.

    I have been up and walking today without much pain. Waiting to eat real food soon. This liquid diet is for the birds.

    Hope everyone who is going through this process has good results and gets back to living rapidly. I plan on enjoying the rest of my life, bag and all!

    Grandma to 3

  • AMG

    Member
    August 5, 2019 at 10:01 pm

    I too had RT2 and researched all my options. Initially the surgeon said I had the three options but my doctor said I could not have a neobladder because of the location of the cancer. I too was beside my self but continued to research and found that the neobladder is very difficult for women and has a very high incidence of incontinence. In addition there was possibility of catharizing from the urethra. That sounded uncomfortable to say the least. My surgeon recommended the Indiana Pouch. That is what I chose. It was a very difficult recovery period for me. Surgery last April- felt like I spent my whole day in the bathroom catharizing for months. I had a lot of issues leaking from my belly button. I no longer peed my pants- I peed my shirts! Slowly but surely my pouch’s capacity to hold liquid increased and now I only catheterize every 3/4 hours. I finally felt myself again around October and started not being so terrified of springing leaks. Life is back to normal. Now I carry my catheters in a makeup bag in my purse and use public restrooms. It takes a bit longer to urinate but being cancer free makes up for that minor inconvenience.

  • cynthia

    Administrator
    August 5, 2019 at 4:26 pm

    Lee lee, I had my RC done at the University Hospital of Chicago by Dr. Gary Steinberg, and have done well with it since 2006. I had done a bit of research and with the problems woman sometimes have with the Neobladder I felt that the Indiana was my first choice. In my next post to you I will get further into this but due to the radiation to my bladder I could not find anyone in Boston that would do anything but an external appliance, I live in Western MA so Chicago was a choice for a reason. I needed someone who had a LOT of experience and Dr. Steinberg also had experience in urinary reconstruction following radiation.
    No matter what type of diversion you have there will be a learning curve. Both the Neo and the Indiana have to be trained. With the external appliance it finding the right bag and adhesive and the such, but we can talk ,more about that when you get there. But that is just the beginning what is it like after the training and the healing? For me the Indiana has not changed my life as much as one would think. My stoma is in my navel so has not really affected my body image and my love life is fine. Since I have had it I have hiked, snorkeled, swam and done everything I would wish to. By the way I am typing this from the road I am returning on a solo road trip from MA to FL and will have my 63rd birthday in a few weeks.
    As for how often I catheritize it depends on how much liquid I drink just like before. It tends to be about every four hours and at night I set my cell phone to wake me up after four hours. I have a collection of makeup bags that I carry in my purse with my supplies. Other than making sure I have supplies it really isn’t a big deal. It has never hurt to cath and to tell you the truth in public restrooms it is nice to not have to sit down, who knew? (men have known this for ages, they could have shared.)
    I still have a few hundred mile to go before I hit home so I have to run. I am sure you have more questions so just let me know and when I get home this evening I will give you my experience with the bladder sparing protocol.


    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
  • Leelee

    Member
    August 4, 2019 at 7:02 pm

    Cynthia, would you please tell me more about the Indiana and the specific doctor that did your surgery. If the cancer had not spread to the urethra would you still have chosen the indiana vs the neo bladder?

    I have t2 muscle invasive bladder cancer and I am in the midst of decision making after 2 turbt surgeries (late june and late july).

    THANKS for any and all information!

  • cynthia

    Administrator
    July 24, 2019 at 11:55 am

    Hi Grandma, Sorry you have to be here but welcome. I had my Indiana done by one of the top guys in the country he does 3-5 Radical Cystectomies a week. I once asked him if hypothetically he ever needed a diversion what he would pick and he said if he was a man a neo bladder and if a woman an Indiana. As Sara Anne said about a third of woman for reasons they are still looking at will either be hyper-continent or incontinent. My cancer had spread to my ureathia so that also had to go and the Neo was not an option so I received my Indiana in 2006. It is really convenient in several way. I no longer have to worry about having to do the balancing act we women do in public restrooms as I can urinate standing, who knew how convenient that is? I wish you could have the diversion you wished for but like me I am sure you will adjust. I can honestly say my diversion has not stopped me from enjoying life at all. It is an adjustment but you would have had to train and adjust to any diversion. Make sure what ever type of diversion you have it is done by someone that does a high volume of that diversion. If you have questions I am here and will help if I can. I am traveling today so It would be tonight or tomorrow morning but I will get back to you.


    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
  • sara.anne

    Member
    July 23, 2019 at 4:28 am

    Sorry to hear about your diagnosis and your issues First from your user name I assume that you are female The procedure that the doctor spoke about first is called a neobladder . If it works it can eventually, after training, act almost as if it were a real bladder . Notice that I said if it works . For some reason related to our anatomy women have many more problems with neobladders than males do . While some are successful many more either find themselves incontinent or hypercontinent which means they have to use a catheter to void. This is also the most complicated surgery .

    Our president , Cynthia , has an Indiana pouch o continent reservoir which is the “belly button “
    method that you mentioned. While I have not needed a cystectomy I have decided that this is the option I would choose if it comes to that. I have been with her r a lot and if I didn’t know I would never guess tha she was not “normal.” She carries a catheter in a small cosmetic bag in her purse and heads to the bathroom about every 4hours to drain the reservoir. It is like inserting a straw into a bottle. There is nothing on the outside to make a bulge. She can wear a swimsuit perfectly well,

    For this diversion a piece of the intestine is used to make a new bladder which is accessed via a stoma in the belly button or near by. Like the neobladders there is a bit of a learning curve. I don’t want to mislead you . None of these procedures are simple surgery and they all have a significant recovery time . However once the bladder is gone the cancer it held is gone also . Patients seem to adapt well no mater which diversion they choose.

    You have been hit with something that you did not expect and it will take time do you come to grips with it But you will do well I hope that Cynthia will be able to respond to you also but she is traveling right now and so it may be a while

    Best of luck to you and be sure to ask any questions as they come up

    Sara Anne


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

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