UOAA Discussion Board

Hi, I am 37 Years old, Married to a wonderful wife with two young sons, Age 3 and 3 Month. This last October 9th my life Stoped. My doctor after seeing him for blood in my uren told me that I had a tumor in my bladder. He said it was small and that it could be removed by cystoscopy (transurethral resection). After they removed the tumor the biopsy showed that the tumor went deeper than the doctor had hoped.

I was told that it went into the Muscle and that the only safe way is to remove my Bladder. The Biopsy stated that The bladder had a High-Grade Urothelial Carcinoma, with Stromal Invasion, The Prostatic Urethra showed In Situ Urothelial Carcinoma, on Surface, With Involvement of Von Brunn's Nests. Because of this the doctor wants to remove my Bladder, the Prostate and the Urethra.

He told me that since he has to remove the Urethra i am not able to have a Neo Bladder, that I can either use a bag on the outside or he can careate a Pouch and I would use a catheter to drain it.

I told the doctor that because of my age and I am very active with two children I would reather try the pouch.

The doctor did tell me that the pouch can lead to kidney failuer in 10 years because the kidneys have to work harder. Does any one know about the longetivey of the pouch and your kidneys???

I am waiting at this point for a date for surgery wishing there was another way.

The doctor thinks that the cancer was caught early so i will not need Chemo.

I do not know what to expect and have many questions.

With the pouch and a Stoma is there any problems going swiming or in a spa?

The treatment does not scare me as much a thinking my children could grow up without a Dad and I can't help but think why me at age 37?

Thanks for your coments and support.

Larry

Welcome Fellow Orange Countian -

I don't have many answers - accepted my surgeon's recommendations for surgery in June 2004 without asking very many questions.

I have an internal pouch - was told that he would try for a pouch because of my age (59 then) - had I been truly geriatric he would have recommneded an outside bag - that sounded to me as if he was not recommending something that would shorten my life (re: kidney failure) - remember that physicians are to explain the risks and benefits of various treatments proposed.

I didn't have time to search for all the messages from long time internal pouchers (wanted to reply before heading off for work) - I am sure that I have read posts from others who have had their pouches for years and years.

As for swimming and going into a spa, although I was promised that there would be no problem, I waited two years before going in the pool - it was not necessary to wait so long - it was fine and I was very excited (just wore a small patch of waterproof-tape over the stoma which was invisible under the bathing suit - I still have some female vanity left at this age) and felt foolish for waiting so long to do something that I enjoyed so much.

I did not have chemo - my surgeon/oncologist also said no need.

On my 2nd anniversary vist (had gone every six months for vist and lab tests), I was told that I could wait a year to return - again, sounded great and I am interpreting that as no great worry about my kidneys.)


This is a great site with some of the most positive people on the planet - their support/knowledge/enthusiasm for life is get-well-faster medicine in itself.

Keep in touch

Susan

Thank You Susan,

Your coments mean alot to me. I am very scared and any imput helps as i waite my surgen with Kaiser to get back to me with a date.

Thanks.

Larry

Maybe more supportiver news from me - I am also a Kaiser patient and had my surgery in LA (Kaiser Sunset) - Dr. Jon Kaswick - I'll rave about him (and most anyone on his team)

Susan

I just got back from my preop appointment with my doctor. My Surgery will be this Sunday at the Kaiser Lakevue in Anaheim. They will be removing my Bladder, Prostate & Uretha.

I hope Kiaser know what they are doing. How long did it take you to recover?

Thanks.

Larry Tournay

On two visits, the doctors told me the story of the woman who was my age, had just had the same surgery and had just been discharged from the hospital that day (or two days before, or some such thing), one week after surgery, and was able to go home without the use of pain pills.

I decided that I could do the same and I did - and figured that my time in the hospital was meant to be spent allowing my body to heal, used the morphine pump I had to ensure no on-set of pain (don't worry, the pump is programmed to ensure that you do not over-dose so sometimes when you push the button nothing comes out but if you are pushing the button BEFORE pain, like I did, you have no idea that you didn't get a "fix." I did go home one week after surgery - floating on a natural high that the surgery was behind me (the cancer too). I did end up with an infection, which made my full recuperation take somwhat longer, but started back to work 3.5 months after surgery (my surgeon had released me after two months - which was just about the time that I had stretched the time between catheterization to the maximum time reasonable.

Now, my advice to anyone looking at surgery is to go with the pain meds as offered - your body needs its strength to heal quickly and shouldn't be made to use any energy enduring pain --- at all levels of health care physicians are suppose to address pain management and I figure that I now definately know the reason why.

After surgery. I was told not to lift more than ten pounds, but that did not last for very many months (actually, I think that I would have gotten an okay sooner, if I had only had an appointment for follow-up sooner.

Do not worry about MY infection - my surgeon was suprised - I am writing to you now in my healthy, happy, it's-a-great-procedure state.

Who is your urologist and who will do the surgery?

Susan

I have had both types of urostomies. I started off with the ileal conduit- where you wear an external pouch, then becuase I had trouble with it I was converted to the internal pouch. That was 15 years ago. I will tell you that the internal pouch actually protects the kidneys as there are valves so that urine does not reflux or back up inot the kidneys. With the ilela conduit you will have reflux and because of that you are at risk for more infections as well as other kidney problems. I was 30 when I had my bladder out. I am now 50. My children had just turned 3 and 5 when I had it done. They are now grown men in thier 20's I had a disease that destroyed my bladder so it had to come out. Good luck with the surgery- I hope all goes well.

Hi Susan,

My Urologests are Dr. Yenning Chuang and Dr. Michael Poon from the Sand Canyon Office in Irvine. They will be doing the surgery of removing the bladder and prostate and they said another surgen would remove the Urethra.

Larry

Larry,

Susan has given you good advice. Although my pouch is not for urine, I can tell you that you DEFINITELY will be able to swim and do ALL activities you did before with, and without, your kids !

Best of luck to you. Please keep us informed of your progress. We'll be rooting for you !

Lynne

Larry,

Sorry I didn't see this post until tonight but I'm wishing you all the best for your surgery tomorrow. I had radical cystectomy with an ileal orthotopic neobladder in '05 for bladder cancer. I was 37 when diagnosed, but it was not my first cancer. Though I was glad to be a candidate for a neobladder, like many people have discussed here, I've had lots of problems with it, and realize there are pros and cons with each surgery technique. But when it comes to managing cancer you have to do what's going to have the safest bet to get rid of it, as much as possible.

It's been quite a journey and somedays the best I can do is be glad to be live and among the complaining. Most days I'm just grateful to be alive, breathing, and up and around. Life is changed permanently but like so many good people on the UOAA board I can still count my blessings, and know the value of a day more than most. And my second great joy in life, after my circle of loved ones, is swimming! I was back in the pool three months after surgery. You will too, but maybe you'll be smarter than me and wait a little longer.

Hope all goes well, and best of luck to you and your family.

Bea

Last Sunday I was going to have my bladder removed along with the rest of the plumbing. Befor they opperated the surgen told be they were going to recheck the spot where they removed the tumor to make sure it was in the mussel. He told me that there was little to no chance that they would not have to do the surgery that day.

About two and a half hours latter I woke up in recovery with my bladder. The surgen/ doctor told me that they were not able to find mussel in the sample they biopsyed that day and that it looked liked it was just superficial.

Next week they will be starting me on BCG treatments for the cancer for six weeks. I hope this works.

I feel like i just got a seconed chance, a gift from god.

Thanks for your support

Larry

Wonderful! Wonderful! Wonderful!

I have been thinking about you all week and hoping that all went well - and it certainly sounds as if it did!

Susan

Larry, thanks so much for letting us know the good news.

I've been thinking about you, too and this was great to hear. You and your family must be very relieved.

Best of luck with the BCG treatments.

Bea

Larry,

That is wonderful news.

Lynne

Are there any cancer support groups out there for bladder cancer survivors or can you help with suggestions on how to deal with it? I live in NH but very close to Boston. I had my surgery back two years ago. I have a urostomy (external). And now it's just normal operating procedure for me. I've got a good attitude and have adjusted to it without problem. However, I do get creeping thoughts about the cancer returning that can get very depressing. My cancer had spread beyond my bladder into my fat tissue. That makes it worse I'm told but I've gone two years now with all clean check ups. I also had chemo before surgery, which I have been told can improve your odds against a reoccurence elsewhere in the body. Do other folks out there struggle with this and how do you handle it? Thank you!