bladder neck tumor

Hi Tim,
I meant to tell you way back. Sorry about those 14 years of fighting the beast must have been plan old hell for you. I got so many things going through my mind I forget a lot.
I asked the doctor yesterday about how long of a stay he said 7-10 days or up to 3 weeks!
These extra weeks depends when your bowels wake up.

What do you mean being up all night doing irrigation stuff?
Why, do to blood clots?

Pelvic floor muscles I know when I was younger I could cut the flow off.
I have tried to do this now and it’s not working for me.
I’m on prednisone which makes your muscles weak and also do to the last 3 biopsy in June, July and November my have something to do with it.

We planed on taking our motor home on a trip in April for 3 months
I did expect a follow-up but not that many well have to wait and see.

“400 just to give me that nighttime continence”. So Tim, how long would that be?

I live in USA

Glad your having fun and went out for a good meal.

I smoked for over 48 years
Quit in 2003 I’m sure that caused the cancer.
Where you a smoker to?

Jeff

Jeff
I was in for 9 days altogether. Some are in for more, up to 3 weeks I was told. Yep, I had a foley catheter in for three weeks post hospital which is the reason I was up all night doing irrigation stuff. Its cumbersome as you know but it passes. It could have come out after two weeks but I had a few infection issues and felt absoloutely grotty. This is common after this surgery and with a catheter in you for so long.

Basically, whilst the neobladder was healing and welding together, you drain it via a catheter and then, when it's healed and not leaking (which was established with a urogram) the catheter is removed and you start the process of stretching the bladder by trying to hold the urine in using pelvic floor muscles (this was impossible for me for first 48 hours but gradually you see improvement). I started off holding urine for .75 hours and am now at 3.25.

After the catheter was removed I have been back once and am back in for an xray on 22 Jan and then again for a catch-up on 27th Feb. So not too bad and it should I am told get to a year between visits eventually. This will be for x-rays and the odd cystoscopy. This year I expect quarterly examinations and next year possibly 6 monthly. I'm in UK and different centres have different regimens. It's all a hell of a lot better than the 3 monthly BCG/Cystoscopies Ive been having for the last few years.

My neo currently holds around 250 - 325 ml and id expect it to eventually stretch to no more than 4 -500. I'm pretty happy with every 3 hours in the day but will go for the 400 just to give me that nighttime continence. Or help at any rate. I hope this is useful info for you. I'm me and you may have different issues but I hope it's a good rough guide. Its my own experience anyway.

70 miles sounds like a bit of a hike for sure. I have found that since the op I am able to pick and choose my dates with more confidence since the urgency of the original diagnosis is less. You do need to keep the observation going for the rest of your life as there is a chance of developing tumours in the ureters and also the urethra since they share the same tissue as your bladder did. I also have to have chest and other x-rays just in case anything spread from the original disaese. You don't need to worry about the bladder and prostate any more though!

I've just been out to dinner at a friend's and have had a glass of wine and a great meal. I thought I would be in a much worse position at this stage. Life seems good right now.

All the best

Tim

Hi Tim,
The last biopsy I had with the blood clots and spending 8 days on and off in the hospital real took a toll on me as it was everyday I couldn’t eat 3 meals as they didn’t when or if they needed me to go back to operating room. So they would come in late like 3pm and check and say nope not today. Then I could eat a meal this went on for 4 days. I lost too much blood to boot.

How long was your stay in the hospital?

Did you go home with a catheter? If yes how long did you have it? Is that why you said “you’ll be up all night for a while dealing with saline and urine? The only time I needed to put saline in via the catheter was due to the blood clots.

Did you have to go back to them or your Uro for follow-ups? If so how many times? We live about 70 miles from the Medical Center.

The ride back and forth for me after removing parts of the prostrate wasn’t easy.

“I think I am developing a feeling to go that is quite similar to before”
That sure sounds great!

I read that they want you to pee in a urinal and record the amount. Also I think there is a limit on how far you stretch the bladder.

So where talking about 4hours between max? Seems to me I go now every 3 hours in the daytime. At night it’s just before I go to bed and sleep through the night.
After my biopsy I need to pee a lot more day and night. So I would think once the insides get healed you should be going less.

Jeff

Hey Jeff
First, everyone is different! I'm 43 so our issues are pretty similar though. For me, I was told not to drive a vehicle for 6 weeks. I probably could have driven at 5, but the instruction from the docs would invalidate my insurance for 6! You need to be able to do an emergency stop effectively was the reason given. Raking tree limbs may take a bit longer but I was doing basic garden work at 2 months and, for example, I cleaned the whole house yesterday including hoovering. At 5 weeks from hospital I was also doing all my own cooking. Don't push it though. Stressing abdominal wounds can wind you up with a hernia which you don't want!

When I first came out of hospital I had my girlfriend staying with me. It's essential that someone is on hand like this for the first few weeks as I couldn't even boil an egg and brushing my teeth made me exhausted. Also, depending on your surgery, you may have tubes and things to manage and, with your brain not working 100%, it's good to have someone around to help. You'll be up all night for a while dealing with saline and urine.

When I say 99% during the day I would also add that, for me, it's not been a constant process. I may get 99% one day then go back and have a bad day. But if I look at the curve over a longer period there is improvement. All in all I'm pretty happy with progress.

On the nerve sparing, I personally could tell within 4 weeks or so that something down there was ok. But I know it can take many months for some people. My surgeon believes that the sooner you get using it again, the sooner it comes back to life if the sparing has been successful or partially successful. I doubt I'd get a full erection right now without drugs but I'm very happy that it's working really well with them.

I too have been told that the neobladder can be converted to a pouch down the line. But, though the chances are better, even a pouch cannot guarantee no leaks. I'm going to give my neobladder at least a year before I even think about a convertion and I've absoloutely no reason to believe it'll be necessary.

I think I am developing a feeling to go that is quite similar to before. Certainly if I approach the maximum current stretch of my new bladder I can feel it and this is often when I get a bit of leakage. Leakage is just an occupational hazard right now but it is improving. I worry less and less about it each day. I'm still stretching my bladder (I hope to go 4 hours before too long) and then, I believe, as long as I go within that time, leakage should be minimal. I wear a pad every day but there are days when I probably don't need it.

I'm amazed at how close to normal I feel with the neobladder. In fact, if I'd known how my disease was going to progress and how the neobladder worked, I would have done it sooner probably. The surgery is pretty gruelling; I think anyone here with a neobladder will tell you this, but it is definitely very getthroughable! You have bad days and setbacks and weird, unpleasant feelings and side effects but gradually you normalise. I've met people with pouch, neo and bag and all cope with their new appliances with equal aplomb. Your mind has incredible adjustment capabilities.

It sounds like you've been through the mill already so I'm sure, if it comes to it, you can deal with the op. I'd been treated for BC for 14 years. I'm sure from a standing start it's harder. If you have any questions please ask away. I'll answer anything I can.

Best Wishes

Tim

Hi Tim,
Glad your having a speedy recovery.

How long was it after you got home that you could start doing things around the house. Like drive or rake up small tree limbs?

I’m 59 seems your a lot younger and would heal faster than me. 99% dry in the daytime great! I have the same concern nighttime incontinence being particularly hard to control. So you’re saying at night also your peeing every 3.25 hrs? You have no feeling of having to go right? I understand it take about year to have nighttime control so you’re doing well.

I read somewhere that they can do some surgery after having a neobladder to help incontinence. I also read that having the neobladder you can change it to pouch if need be.

Yes I meant nerve sparing so happens the Hospital called today about me joining a study group. She told me the nerves are so small they can’t see them I took that as a hit and miss keeping them connected. I read it takes about year of healing

I too would prefer the pouch to the bag it all comes down to what they have to work with.

In 2003 the V.A.hospitial they found blood in my urine so after a few scans, unltrasound and x-rays. This showed a large prostate and a very large kidney stone. They went into my bladder and found a small pea shape tumor at the neck of the bladder this came out to be full of mucus nothing to worry about. At the same time they used sonic waves to blow up the stone. Now I know there should have been follow-ups on the bladder but they spent the next 3 years worried about my prostrate.

In May 2006 I pised blood call the doc. He said go to the nearest ER.
After cat scans and x-rays he said I have advance prostrate cancer.

The first biopsy I had in June 2006 the Uro had to remove parts of my prostrate just to see the tumor in my bladder and couldn’t tell if he got all of it or not. The biopsy he gave the lab was from the tumor in the bladder and prostrate. He told us I had cancer of the bladder and prostrate and needed to find out where it started from or was it two different cancers.
The biopsy wasn’t good enough for the lab to figure out so it went to the U.O.W. for a 2nd. Opinion.
I also went to the U.O.W. for a 2nd opinion.

The 2nd opinion I had in July at U.O.W. medical center again he removed more prostrate and did two biopsy’s bladder and prostrate. He didn’t see anything in the bladder. No cancer in the bladder or prostate.

Nov.7. Went back for the 3-month follow-up and he saw something in the bladder.
Nov. 28th. Went back for a biopsy of the bladder and due to the location couldn’t dig deep to see how far it went. The tumor is high grade T1 or T2.
I spent 8 days in and out of the hospital after that one due to large blood clots.
I hope never to go through that again. It’s like needing to pee and your bladder is getting bigger an bigger and they only thing that comes out is a few drops of blood. I never thought I would be so happy to have a Foley catheter in me.

Best Wishes

Jeff

hey jeff
had mine on the 19th Oct 06, so about 2 and a half months ago. I'm feeling pretty good right now and will go back to work in Feb/March. A few very minor aches and pains. Barely noticeable. I could probably do the odd day now but I don't want to push myself and I can just about afford the break. I had a few beers over xmas and walk almost every day for a mile or two. I eat what I want within reason. Leakage has been the main frustrations for me, nighttime incontinence being particularly hard to control. My neobladder is plumbed into my urethra so I pee fairly normally, at the moment every 3.25 hours. I'm now 99% dry in the day and improving by night. Other types of internal pouch are catheterised through a small hole somewhere on your abdomen. I know people with this and it works fine too.

Even so early I feel extremely normal! I deal with any leakage using the vast range of incontinence products that you will become familiar with should you have this op during the early stages. There are big swathes o each day where I don't even think about it.

By "sparring" i assume you may mean "sparing"? which I take to mean nerve sparing. This means that your surgeon will attempt to "spare" the nerves that control erectile function during the operation. I'm sure he will explain this to you but these nerves run very close to (or on?) the bladder and prostate and can therefore be damaged when they are removed. Sounds like he will take care not to do this. Though not 100% guaranteed mine worked out ok and I can still have sex but I do need a bit of help with Viagra and other drugs. Using these it is no different to before. And it's still very early days for me. Once the prostate is gone you can achieve orgasm but will not ejaculate ever again. I also banked some sperm prior to this op as I don't currently have kids.

I would choose pouch over an external bag. Sometimes this isn't possible if, for example, a patient is elderly and there are concerns about the extra complex surgery to create the pouch from bowel. There are many other factors too I guess. I understand the bag is a much simpler surgery. That said, I know people with external bags and they are fine and have made them work for them.

It's also worth mentioning that I tried conservative therapy (BCG) before bladder removal and I wondered if any other options had been offered to you and what your case history was? You don't mention the grade and stage but say they "slide towards the lower end". My tumour was a G3 with CIS when I took the decision to have the organ removed. I had many years (14) with G2 tumours prior to this. Make sure you are getting the full info, numbers and all, when you make your decision. This is a great site and it's always worth posting questions on here about any aspect of your treatment. Helped me loads.

Best Wishes

Tim