- This topic has 9 replies, 4 voices, and was last updated 9 years, 1 month ago by
.
-
Posts
-
Hi, my name is George.
I’m a 54 year old just diagnosed with high grade invasive bc Oct. 2015
I’m almost done chemo ( 1 more dose) and have to decide on surgery soon.
Apparently , I’m a good candidate for a neobladder (according to the surgeon).
Honestly, i’m afraid of potential complications involved and am almost leaning towards urostomy bag. Anybody can give me some insight regarding pros and cons of both? I’ve read the info online but would like to hear from anybody who has gone through either surgery and what life is like after surgery.
Thanks, look forward to all replysHi George,
Welcome to Bladder Cancer Canada – I am sorry to hear of your diagnosis.
You will find good help here. a site of many equally dealing with Bladder Cancer.
I am 59. When I was first cystoscopied and then again after the first and second TURBTs, my Urologist thought I had an invasive Tumor either T1 or T2. My Urologist said that if it turned out that way, I was “young” and a neobladder would be a good option.
Ultimately the pathology was quite different. As such, I did not have to consider a decision like you are.
There are quite a few people on this site that have had Urinary diversions. I am sure you will get some good first hand advice. In addition Jack Moon, who is with the BCC, is very helpful.
I wish you all the best
God Bless
DDep
Dear DDep and Ken, thanks for both your replies. I sure wish I didn’t have to make this decision.
I just wanted to ask you Ken, how long did it take for your recovery? Do you still have to have cystoscopy ?
I’m a fairly fit 54yr old with no other major health problems, an avid golfer and I own a small restaurant.
Honestly, its the self catheterization aspect that’s really causing me to have second thoughts about the neo-bladder.
Thanks
GeorgeKen
Thanks for all your answers to my questions. Its always better to talk to someone who’s been through these things.
I still have some time before I need to make final decision, but I will definitely speak with the surgeon first.Thanks
GeorgeHi George. I was almost 53 when diagnosed with BC in January 2013. Also went through chemo as you are – 3 rounds. My radical cystectomy was in June 2013, so almost three years ago. I have been cancer free since the removal of my bladder. I went with the neo bladder, so here is a little of my experience. Like Ken said, I was in hospital for 7 days, they had me walking the day of the surgery, and every day after, which I continued at home. It is major surgery, so it does take time to heal and recover. I went back to work full time three months after surgery. Walking and eating properly right after surgery are important. But recover you do, and that is the greatest thing. To all diversions there are positives and negatives, and complications I suppose. But they can all be handled, and you get used to whatever diversion you choose. With a neo, there is a period of training your neo bladder post surgery, to increase its capacity and your ability to both hold it and to go. I visited a physio therapist prior to surgery for a check of my pelvic health – which turned out to be great – they are not kidding about doing kegels. Takes a bit of time to increase your time between voiding and learning to use your muscles, but success does come. One of the issues that a lot of people (most?) who have a neo deal with is regaining continence, both day and night. My understanding is that most gain full continence daytime, while some experience ongoing challenges at night. Others can advise you about how to handle this, with the use of Depends. However, my experience has been a little different. I did seem to produce a lot of mucous (mucous is normal with a neo). Mine would build up and cause bladder stones to develop, which caused me to retain urine, which led to a couple of minor day surgeries to blast them out, and to widen the neo bladder neck. Once I learned to self catheterize regularly (a few times a week, sometimes daily) it is much better. To be honest, I too was scared at the thought of self cathing, but the thought of it is worse than actually doing it. It is no problem, and the result is worth it. Remember that most people who get a neo DO NOT have to catheterize. So now almost three years later, life is great. I am moderately active (not a golfer tho!), work full time and travel regularly. I void every three hours or so, but can go longer sometimes. An ongoing issue is interrupted sleep, but at this point I just go when I wake up in the night, usually twice, as well as going just before bed, and as soon as I get up. Your sex life will be affected, and that is worth a chat with your doctor as well. That is my experience so far. I am very glad I chose a neo, for a lot of reasons. Part of my job is standing up in front of people, and a lot of public interaction, so the neo works great for that. I would be glad to answer any questions you may have. Keep in touch and let us know how things go. One of the gang on this site in particular was a great help to me, even chatting me with my by phone as I was on the mend post surgery. I am sure one of us would be open to doing that for you too. Take care. Gord
George, I forgot to answer your question about cystoscopies – it is much easier after surgery because they also remove the prostate, which is the most uncomfortable part of the cysto, correct? The couple I have had have been a breeze compared to before the surgery. Well, not a breeze, but a heck of a lot easier! This also makes self cathing easier as there are no ‘obstructions’.
Hello and welcome, this is the right site. in my case I was 72 when diagnosed with high grade, stage 3 and muscle invasive. I took chemo prior to surgery. My bladder, prostate and 21 lymph nodes we removed 26 May 2014.
You heard lots of comments so far. in my case I did some research and at 72, I decided to go for the Illial conduit the bag. 6 days in hospital, 6 weeks recovery. Surgery took 5 hours and 20 minutes and no major complications. As expected, bowels we somewhat different. I also took 5 weeks of radiation, if was quite a journey. I suggest you do your research and make a choice. There are pros and cons for both. At your age neo could be best for you. My urologist never influence my decision. It takes time to get used to all the spare parts. I feel fine I was already retired. Best of luck and feel free to ask me any questions. I can even call you, I have Bell unlimited. USA and Canada. Cheers, Sam
Hi Gord and rock2013, thank you both for sharing your experiences. I’m so glad I can get feedback from people who have actually been through what I’m about to.
I’m still undecided and have yet to talk to surgeon. I’m wondering about complications from Neo-bladder as we get older. Any thoughts? I guess that’s something I need to find out about from the surgeon as well.
GeorgeHi again George, like Gord said your sex life will be affected. part of my surgery was to remove the semenal visickle no more children! but it is not the end, no problems getting an erection of course it is dry. I am sure you heard “getting there is 3 quarters of the fun, well After surgery we only get that far. The blood vessels are still there. My wife does not mind I became less self centered and please her more.
Cheers, I thought I would share a bit of humour.
- You must be logged in to reply to this topic.
