very confused

This is a very timely topic for me as well as my RC is scheduled for July 22nd

I am a 52 yr old male and was diagnosed at the end of April. According to CT Scan, the mass was a bit over 5CM (roughly plum/tennis ball size) Had TURBs on May 19th and May 28th and most was removed. Some high grade was found on the 2nd TURB. Pathology was confirmed by Slaonh Kettering in NYC. Dr took my case to a Tumor Board of 6 docs who all agreed that an RC was the way to go. I got two additional opinions through Drs connected to family and both said RC.

So, now the task is to selct a diversion. My wife and I were both very interested in the Indiana Pouch as it seemed like a good internal solution without as mant problems with leakage, etc. Well, one of the two Drs connected through family is a uro on staff at a major cancer center (too far for me to use though) and he gave me one very important piece of advice and that is to pay attention to what your doctor "seems" to push as that is likely to be what they have the most familiarity/skill with. Sure enough, when we questioned my surgeon (who talked a lot about neos) and he gave us the numbers of procedures he had done, it turned out that he'd not done many Indianas. Now my family friend had anticipated this and told us that from what he sees, it is now mostly ilials and neos with very few (if any) Indianas. His Department Chair at his medical center trained at the hospital (in Indiana) where the Indiana Pouch was developed and did many of them but supposedly, he has not done ANY in the past 5 yrs as everybody at this medical center is either opting for neos and ileals. I surfed over the the Memorial Sloan Kettering website www.mskcc.org and tried to see what they had to say and they don't evern list the Indiana on their site, just the ileal and neo.

In addition to his advice about trying to see where your doctor's expertise lies, he also said that in his opinion, it is not a good idea to go with a particular diversion from a doctor who hasn't done many (or any) of them.

So when my doc said he had not done many Indianas, we asked him if his partner or any of the other uros in the area were doing many Indianas and he said no. He said he could find us someone but that it would probably required going much farther away and then post-op care would be more difficult due to distance.

So it looks like my choices are between the Ileal and the Neo. Dan62 and Leigh's postings in this thread have given me a lot of good vibes. Thanks guys

I stumbled on this site a couple of days ago after spending a few weeks at bcan.org and this site is far more active.

I read your post yesterday but did not have time to sit and reply. Now, today Leigh has responded in a very similar manner to what I would have said. The only difference is that my husband, who also has a neo-bladder, has more night-time incontinience than he would like. He uses pads/diapers to remedy the problem, which works fine. He has no problems during the day. He is a very heavy sleeper and as soon as he falls into a deep sleep he leaks. By the time he gets up, even in the middle of the night, the neo is empty! The doctor has suggested limiting nighttime liquids but I am convinced the problem is more with his body being so relaxed - especially since he has no problems during the day. Like Leigh, he chose the neo as it is the most "natural" diversion. He has never cathed (except while in the hospital for cleansing) and it didn't take long at all for him to "learn" how to empty it. Even with the nighttime issues, he still is happy with his decision to go with the neo, free of bags and catheters. Wishing you all the best during your surgery and recovery.

Margot and Harry

George, after your R/C follow the motto of the British Diplomatic Service (which I have adopted) which is, "Never miss an opportunity to use the loo".

Regards,

Peter Konomos

I just want to take a minute to Thank all of the wonderful people who responded and are trying to help me thru this challenging time. I still have not made a decision. Hopefully in time I will be able to support someone who may need the same help I do...
Thank you all so much,
George

Dear George,

Reading your post brought back the memories and thoughts I was having too just before surgery.

I chose to have the neo-bladder purely based on having the best replacement available from my original bladder.

Going into surgery we never know if the neo can be connected and then your second option kicks into action. For me that would have been the internal pouch with openning through the navel.

Luckily the neo-bladder surgery was successful and now I am 10 months post RC with a wonderfully operating new bladder.

The only visible sign of surgery is the scar from navel to pelvic bone. The initial recovery for me after surgery was gruelling and it took several weeks to feel on form again.

Once all caths had been removed I learned within a day or two how start and stop the flow of urine from my new bladder. My urologist recommended self cathing for the first few months to cleanse the new bladder even though I could urinate with no problems. I found this uncomfortable initially but also became an expert at self cath. This is not always necessary though and many have never cathed with the neo-bladder.

The first few months were hard setting my alarm every two hours during the night to urinate. Now I wake naturally with a full feeling once a night to urinate and I am so thankful for that.

In the day time I have no leaks although at night I wear a male pad in my underwear incase of leaks. The only time I leak... and we are talking drops... is when I am very tired and fail to get out of bed and fall back in sleep.

I have a regular life and eat and drink...also beer...and have a sex life. I have started back at the gym lifting weights and group cardio lessons and ride my bike and have had no problems.

What ever decision you make regarding your diversion you will jump the initial hurdles that come your way and then naturally adjust.

George..all the best to you..

Leigh

Hello George,

I am 68 years old and active. I had my R/C in 11/07 and went with the external bag primarily because of my age and I didn't want to put up with the problems and training associated with a neobladder. I only get up once during the night to empty the bag and wouldn't have to get up at all if I used a night bag. The bag has worked out well for me with no oder or leaks, once you figure out a routine of keeping it clean. I do everthing now that I did before my R/C.

Nevertheless, at your age I would of oped for the neobladder, particularly if I was single, regardless of the risks. My MediFocus guidebook lists some of the following potential risks and complications associated with a neobladder that you may want to discuss with your doctor. Urinary incontinence, infections, stone formation, obstruction of the kidneys, metabolic complications including vitamin B-12 malabsorption,asidosis,diarrhea and increased risk of colon cancer due to chronic exposure of the bowell to urine and recurrent infections. I know this sounds bleak, but a lot of people on this site have had successful experiences with neobladders so you should have some very good input. IF YOU GO WITH THE NEOBLADDER, IT IS CRITICAL THAT YOU HAVE A VERY GOOD SURGEON WITH A LOT OF EXPERIENCE AND SUCCESSES BEHIND HIM.

Isn't life grand. It forces you to make critical choices. I hope your cancer is localized and you will be clean after your R/C.

Regards,

Peter Konomos