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Hi – I am a 60 year old male who likes to golf, run etc. and travel.
I need to decide on a neo-bladder or the bag system over the next few months.
I would appreciate hearing from someone who is living with either of these systems and get their opinion.
Does anyone know if you can swim in a public pool with the bag – one person has told me that it is not an issue.
Has anyone been able to get travel insurance after these procedures?
Any advice or comments would be appreciated.I just started chemo and so far it has been fine with no issues.
It was not as scary as I feared and the trick seems to be to take the Meds and drink a lot of water and Gatoraide plus an energy drink every day.
Thanks for your help.Hey Porter. First I wish you the best. I have been fortunate so far and have not had to have a cystectomy so I cannot comment on your question with any direct experience. I came very close to having a cystectomy though and I had to make a decision ahead of time so I would know what to do so I did a lot of reading and research. This site has been the most help though. Based on what I know having an ileal would not in anyway prevent you from doing all the things you used to do including swimming and gold. People I know with an Ileal have not had any issues. I don;t know specifically about a public pool but I would not think it would be a concern. I mean, how many little kids and teenages are inthe water adn don;t take time to go pee?????? Including me. When I was younger of course!!! The decision I made was to have an ileal. Less complicated, surgery and anesthesia time is much less, complications are fewer and it works when many times those who have other types of diversions end up with an ileal anyway. Yet many who have other diversions do very very well. Obviously there are kinks to work out and adjustments to be made but I think whatever method you choose depends a lot of the skills of the sureon and your attitude. Keep it positive whichever way you go. After all if you need to lose weight this is a plus. My best to you,
Kiowa
Hi Porterwj,
Like Ki, I have been fortunate so far and have not had to have a cystectomy. I know of many who have and most decided on the ileal conduit. They say they adjusted to the new normal very well and are able to do pretty much everything they could before the diversion. From what I I understand, most options work well with the Neo being more complicated and potentially high risks due to the length of surgery. I did have a conversation with my Uro when I was going for my 3rd TURBT. As it turned out, I did not have to decide but I was leaning toward the ileal conduit. At 61, I was less concerned about the look and more about the higher risk even though I was, otherwise, in fairly good health.
Ki has made a very strong point in that whatever route you decide it is important the surgeon has the skills and experience. There are Uro-Surg who do hundreds of diversions a year while others may do just a few. Ideally, if you could have the procedure (either one) done at a teaching hospital. You can get very good advice/direction from BCC and particular Jack Moon, BCC’s Past President, who is still very active for BC patients.
Hopefully others on this site who have had a cystectomy will be able to weight in and offer their experiences.
Wishing you the very best with whichever you decide…stay positive, stay well and keep us in the loop.
Hi Porterwj,
My husband was 64 (2011) when he was diagnosed with bladder cancer. He too is a golfer, runner, bike rides, travels. He has a neo bladder….and had his chemo post op.
We have continued to travel – no issues with travel insurance. We book our plane seats close to the washrooms, for easy access.
We are in Toronto as well.
We kept a “diary”…before all appointments, we brainstormed questions, wrote them down. Then, as the docs talked, I noted their answers into the notebook, frequently they covered most of our questions. By the end of the appointment, we were able to ask only the questions on our list that had not been spontaneously covered during the appointment.
Also, get copies of all your care – lab work, CT scans, ultrasounds, pathology reports, surgical notes. This helps with understanding the issues (different for everyone) and plan ahead.
Malcolm is back at the gym, treadmill running, riding his bike through Toronto 30+km at a time. He does not golf as much any more, the port a potties are not always the best. His neo is good for about 2.5 to 3 hours, then it needs to be emptied.
Happy to answer any questions!Ieva
Hi Porterwj. I was diagnosed with Stage 2 Bladder Cancer at the end of 2012. Went through chemo and had a Radical Cystectomy in June 2013. Been cancer free ever since. I went with the neo bladder, as I am still working full time, out in public and in front of people. Also I am in relatively good health with no other issues. Overall I am really, really pleased with my decision thus far. I am sure you will be reading up on the neo and its benefits/downsides/complications. My neo works really well, has an above average capacity as far as I can tell. You will read about issues of incontinence. My experience is that I have no problems with that, day or night, at this point – the first few weeks and months were very different in that regard. If anything I have issues with retention. My surgeon, who is excellent, seemed to indicate prior to surgery that none, or few, of his RC/neo patients had to self catheterize much after the post surgery period. However, 2 years on, I find that I need to do self cath regularly to keep things open and flowing. While it was a bit of a big psychological deal at the beginning, I am now used to it, and it is absolutely no problem at all. When I am going to be more than a short drive from home for more than a few hours, I will take a little just in case bag with me with the things I need, but rarely use it. Last year, one year post RC, my wife and I travelled to the UK and Europe for three weeks, no problem. I did do a full disclosure to my health ins company and ended up paying $300 for three weeks of extra insurance, vs my wife’s $50, but it was worth it for the peace of mind. So life for me is great, I am used to my new neo, and my new normal, and really glad of the decision.
GordHi Porter
If you would like to actually speak to a few survivors that have either neobladder or the outside bag, that can be arranged.
Just call 1+ 866.674.8889 leave a message and someone will get back to you.
All the best,
JackHi Porter,
My husband, Mike, had an RC in 2012 and he was also 60 at the time and very active. The decision was made very quickly and with very little info so I am glad to see you weighing your options.
Mike chose the neobladder because he was still working as a Building Inspector and had to be in and out of attics and tight spaces alot. He figured it would be easier than an ileal conduit.
What I will give you is a few of the positives/negatives that exist with a neobladder that some doctors and even patients don’t tend to mention.
Positives:
You can’t see the neo and nobody knows unless you tell them.
Mike was continent during the day very quickly.
Mike didn’t have to self-catheterize at all. They showed him how but it was not needed.Negatives:
Lack of sleep. The toughest thing we found was the getting up in the night to empty the neo. We had to set an alarm for every 3 hrs otherwise, he would not wake up and we would have some incontinence. He found not getting his sleep [strong]really[/strong] affected him. It also affected me….not sure if you are married or not but it can have an effect on your spouse’s sleeping pattern as well.
The other negative, in my view, and I am not a doctor is that the surgery for the neo is much more complicated and thus, gives the potential for more issues. Mike ended up having a couple of big infections.
None of this is meant to scare you but to give you an idea of some of the stuff that can and does, in some cases, happen. We wished that someone had told us this before we made the decision. It likely would not have changed Mike’s mind but at least we would have known some of the drawbacks.
Take care and I hope your decision is not too tough on you.
Sorry for the long post.
Monique
My dad made the choice to have the conduit external bag, because he felt that the nighttime regime was going to be to difficult for him with the internal system. But everyone has to feel comfortable with their own personal decisions. I am sure there are positives and negatives to both systems. Good Luck and God Bless.
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