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Living with a Neobladder, please share your story.
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Could you share your process for selecting a surgeon – how many did you talk with, how many did you actually go see, and what made you choose one over the others? I am three months into chemo, expecting RC in December. That gives me plenty of time to choose a surgeon and facility, but I don’t want to overdo it.
If you are in Nevada and had the operation in LA, how exactly does that work? Do you have a local urologist, and how much was he/she involved before and after the surgery?
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Jeff,
Thanks for sharing! You’ll never know how many people you just helped!
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. -
You have probably read over and over again while researching this on the internet that finding a surgeon/facility that specializes in neobladder surgery is very important. I can’t agree more. Also, I feel that finding a doctor who completely understands that the goal of the surgery is not only 100% Cancer removal but also giving you the quality of life you want post surgery is just as important. Have you had this discussion with your doctor? I was told that the majority of the surgeons will as a matter of course remove the prostate, surrounding lymph nodes and major amounts of surrounding tissues to just be sure they got all of the cancer not caring about how it will effect you afterwards. Again, their only goal is 100% cancer removal. They were not used to dealng with a single athletic guy like me who was not willing to live with whatever results came out of this just to be there for their family long term and to continue their couch potato life style.
Starting with my initial visit we were focused on the two goals. Even though from the cystoscopy the doctor could tell that the tumor was muscle invasive and the very aggressive type they still tried to saved my bladder with the TURBT. Even though they did not succeed after these procedures because of the specifics of my tumor (size, depth in the muscle, age) it allowed the surgeon to learn exactly what he was dealing with. During my RC he had a pathologist standing by while he constantly took samples of the surrounding areas for the pathologist to immediately analyze. This way he only removed what was absolutely necessary. When I woke in the ICU he told me “I have been doing this a long time and even though the pathologist is not completely done I am (almost) sure I got it all”. A couple of days later the pathologist confirmed what he said and that no cancer was found in any of the extensive margin samples or scans. This is the type of surgeon you want. He explained to me that the only reason the part of prostate was removed was because the tumor was right next to it. I think the reason my results have been so good and the quick recovery is because the majority of the surrounding areas were spared.
Yesterday, one month out of surgery I went to the gym and took it real easy. I did 10 minutes of each of the stair master, elliptical trainer and treadmill. I wore my regular underwear and did not leak.
I can’t emphasize enough that before the surgery make sure you are in the best physical shape of your life. It will make the recovery that much easier. Good luck! Getting walking around the hospital floor within 1-2 days after the surgery even though the catheter will be hurting you really helps. The morphine based pain meds are great for the pain but suppress your breathing and make you constipated (very bad for your traumatized intestine where they took the piece out of) so use as little as possible.
I just received the first invoice that only included the 7 day hospital stay and fee for use of the facilities for the surgery. It does not include the surgeon, anesthesiologist, pathologist etc. Total $193K. Ouch! Fortunately my insurance will cover most of this. I would double check what your insurance covers and does not. The final cost of the TURBT and related was an additional $30K. -
NV Jeff, thanks for sharing that. I’m almost your age and approaching RC with neobladder, operation scheduled for late this month. Your outcome is encouraging overall.
You note that your operation spared part of the prostate. I’m wrestling with that same decision. Can you say more about how your physicians characterized the risks of that approach and why you decided to take them?
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After my TURBT and the diagnosis that I would need my bladder removed due to the very aggressive muscle invasive nature of my tumor and its age, size and location in the bladder I was horrified. Without surgery I was given 1-2 years to live. I am a very active 56 year old, my scuba diving, skiing and backpacking etc. are my life and having a bag hanging off my side and/or incontinence issues was not an option. Quality not quantity of life is most important to me. The end result of my surgery at USC Norris by Dr. Boyd is excellent. The important thing is no sign of cancer with no chemotherapy necessary. They got it all with partial prostate removal. I am now 3 weeks after my surgery and one week ago had my catheter, IV and incision drains were removed. My doctor said “do not listen to the internet horror stories”. He was right. One week after surgery I am 95% continent during the day with only a slight leakage when I move quickly a certain way like standing up. At night I leak very little right around the 2 hour mark that I have set my alarm for. When I start to leak I am woken up quickly enough to save my bed sheets. I have an extra waterproof liner with towel on top placed on my bed just in case. Reading on the internet I was afraid that I would have difficulty determining when my neobladder is full. That is not the case. I feel pressure in my pelvic area similar to what you would have with a full stomach but lower on my abdomen. I am able to urinate standing up but find I must sit down to completely void. It has not been a 100% honey moon. I am currently experiencing constipation/stomach issues. I lost 18 pounds since the surgery. Fortunately it gets better by the day. Appetite is returning and bowel movements are becoming easier. My penis has retracted a few inches. The three weeks post surgery were the worst in my life until the tubes were removed. If you are a man and never had a large diameter catheter before it is sheer torture.
What do I attribute my success to? First, I am in great physical shape with very little body fat. Before surgery I went to the gym regularly doing both aerobic and weight training exercises. Learning to use my sphincter and pelvic floor muscles has been relatively easy for me and I seemed to be able to control them the minute the catheter was removed. I am taking 300mg Trunature brand cranberry pills three times a day (Costco). Seems to keep everything flowing freely including at this time a lot of mucus. The mucus flows freely through my urethra with no issues whatsoever. Hydrate, hydrate, hydrate seems to help too even if it means urinating more frequently. I was taught how to self catherize before leaving the hospital but only have used it to test that my new bladder was emptying completely. Fortunately it is. I also attribute my success to my surgical team who has done many 100s of these surgeries over a period of 20 years in a first class facility. Dr. Boyd at the USC Norris Cancer Hospital is extra careful with the first night out of surgery spent in the ICU and then 6 full days in the hospital afterwards. I take both turmeric and mushroom supplements to boost my immune system. I spend a lot of time in China and the fact that they have been using these homeopathic remedies for 1000s of years says something. I should have been using them all along to prevent the cancer in the first place.
I wanted to share my story to give those people preparing for surgery a positive story versus the majority of negative stories you will read on the internet. Also, I wanted to give those people dealing with post surgery neobladder issues hope that things can and will get much better. I think your overall physical condition is the key determining factor.
The bottom line is that the “new normal” is not so bad! -
Okay so I recently was diagnosed with invasive bladder cancer. I went through chemo like a trooper and had my bladder and prostate removed 18 days ago. They removed the Foley Friday and now I am trying to train this new bladder but i have a lot of leakage during the two hours. I do Kegels but it does not seem to help. Any suggestion.
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Hello
Sorry! So Sorry! I should have seen this coming.
But Mr Miller…….. I am a neo bladder success story. You will be one too!!
You will need a good team of support crew. A Great sense of humor! A talented Dr. and Me!Having your bladder removed, and a new one manufactured is no easy deal. It’s a long surgery and they only take the best patients for this. So….. you have passed the first big test! Congratulations.
That “team” is sooooo important. The recovery is rather long and a small but supportive group will make it easier. But they have to know everything going on in your head. Be honest and supportive of them. I found that my wife and I became much closer as we declared war on “c”
And that sense of humor? Make sure it is front and center in your life. Because your life will change. Things will take a while to get back to normal. And that will be a NEW Normal too. You will find that certain foods have a new effect on you. Cranberry juice will be your “go to” drink (don’t ask me why, It just is) to keep urinary tract infections away. But…….. the real reason for that humor is…… incontinence (your new special friend) Even after 9 years, I still have that. And it would drive me crazy, if not for my wife(team member) and her support. You will make a game of finding the right control device and none work perfectly. So there is that team and humor thing again.
Nine Years ago I had my neo installed and they replumbed me from there down. I also had “nerve sparing ” surgery that allowed me to retain my ability to have an erection again (after about a year. So be patient. And you will have no liquid discharge anymore) and I have adjusted to my NEW Normal.
But having a neo has NOT stopped me from being my old normal self. I still ski, ride bicycles, golf, and race a sports car. My wife refuses to let me fall into the trap of self doubt. She is positive and keeps me positive (team and humor) I have watched my children grow and have danced with 2 of my girls at their weddings. (They were also a vital part of my team and knew everything) I still run a small auto dealership and spend a lot of time volunteering to help the community.So, in closing, you have a road ahead of you. But if you have the will to continue (and you will find it inside of you)
you will enjoy the new life that is ahead of you (except for that incontinence thing…. Sheesh!)
And I still plan to dance at my third daughter’s wedding!Wishing you the best of luck
George
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
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New Man! [/size] -
ktmiller11,
It does look the Chemo regimen is normal based on what I have read and been told by others. I have not had to have a neo bladder but, I have 4 friends/aquaintences that have had them. They are all doing just great. One is recent, another 5+ years out and the others even longer. Any major surgery is no fun-I just had a triple bypass 3 weeks ago. Sometimes you have to do it (sounds like a Nike ad)! I am linking a bookmark than many of us have saved discussing what one can expect and the pros and cons of different diversions. See: https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion. I am not sure hyperlink is working but just copy and paste.
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. -
Sorry no one with a neo has answered your post….One of our best is out racing cars..really!
While I have not had a neo, and am female, I can tell you of several I have known. Besides George, who does race cars, others have continued mountain climbing, gone scuba diving…pretty much lived as they had before.
This is not to say that it was easy getting from where you are to where they are today. As you know, the surgery is
not for sissies and recovery can be a bear.Let’s see if someone else will reply
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator -
I guess no one on this forum has had this procedure. Bummer!!!
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