New here....

16 years 11 months ago #4704 by londongurl
Replied by londongurl on topic New here....
Thanks for your helpful replies Jo and Pat... it sounds as though you have both been though a lot... As I guess everybody on here has one way or another. Sucks really. :(
I am still not really understanding really though how they got what they deemed to be a 'large' tumor out through the 'eye' of the penis though. Is there anywhere where I can read about the complexities of this procedure? 48 hours after his release, Dad seems to still be rushing off to the toilet every hour or so. I used to be a caregiver for people with spinal injuries, so I know a bit about catheters and urine bags. I have been saying to Dad that he needs to try to 'hold on' and not keep going off to the toilet as soon as he feels the first twinges of a need, and that because he has not had to use the bladder muscles for a while because of having a catheter for over 3 weeks. I think he needs to 'retrain' the muscles by holding back for a while if he can. Does this sound like good advice or not necessary? I also think with Dad, the pain before the op seemed much worse at night or when he wasn't occupied elsewhere. It was almost like as soon as someone drew his attention to it, it sent him off rushing away in pain to the toilet. I am concerned that if the psychological side of this continues it's not going to do him any good at all in the long run. I think his anxiety is almost as bad as the problem itself (although obviously we are not saying this to him). Any suggestions??
Londongurl.

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16 years 11 months ago #4694 by Rosemary
Replied by Rosemary on topic New here....
Off topic replies have been moved to [link=http://blcforum.com/cgi-bin/forum/YaBB.pl?num=1175520717]This Thread[/link]

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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16 years 11 months ago #4692 by Patricia
Replied by Patricia on topic New here....
London...not unusual to walk into the operating theatre...Memorial Sloan does this just to make sure you are who they think you are. They had a big chalk board with my name and birth date and ask me if that was me which i said yep thats me. They also dismissed me about 20minutes after i awoke from anesthesia and went to the bathroom...keep that line moving!!! Many hospitals are adopting this procedure.....and asking you if you know why you're there ..etc....keeps them from chopping off a leg or something!!..... :D Whatever we can do to help...i had a friend of mine who was in for foot surgery and she actually wrote on her other foot...."WRONG FOOT'........Not leaving anything to a dyslexic doc!!
I would think you could pull up the bio's of the doctors on the hospitals web site like we can here in the states. At any rate...ask him how many of these procedures he does in a year. 5 to 7 days is normal to get results from pathology. Pat

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16 years 11 months ago #4691 by Mike
Replied by Mike on topic New here....
London the reason you don't see any cuts or incisions is because this procedure is done through a scope into the penis. It all depends when they go in what they find dear. If it is a small tumor what they refer to as superfical most times they can get this through the scope by cutting it out. If the tumor has invaded the bladder wall then this is a different story. But with either kind of tumor you are usually discharged the next day as I was and mine was an invassive tumor into the bladder wall. My treatment plan is entirely different and can be viewed under invassive tumors in the forum because it is a more aggressive tumor. My room mate he had a superfical tumor and they were able to remove it because it was not very big and he was discharged the next day also. Now he will have to come back in every 3 months for awhile to get checked out again with the scope what they call a poke and peek to make sure there is no recurrence. Yes 3 weeks it a long time to get any biopsy back from pathology. Most hospitals top is 7 days to wait over here in the states. Wishing You The Best, Joe

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16 years 11 months ago #4690 by londongurl
Replied by londongurl on topic New here....
Hi everyone,
Well, Dad has had his op. They kept us waiting 5 hours for a bed, even though they had asked us to arrive at 7pm for admittance. Dad was given nothing to eat and drink after 12pm midnight, but kept until 6.15pm the next day before the surgery then asked if he would WALK to the operating theatre!!! I don't want to bang on too much about the state of the British National Health service, but these sort of incidences really doesn't instill confidence in the rest of it!!
Anyway finally they removed the tumor which was described as large. I am still fasincated as to how they did this, as he was not cut anywhere!!! Surely they didn't take it out through the penis??? If so it would explain why he is so sore I suppose! They also say that there is a 'thickening of the bladder base' and when I read this my heart sank, as I suppose we have been hoping for what I think you call a 'superficial' cancer, where there is just a tumor that isn't likely to spread. There has been talk all the way through that the prostate was enlarged and this is what may have been causing the extreme pain in peeing, even before the pre-op catheter was inserted, but the prostate was said to feel normal.
Dad is out of hospital (allowed home 48 hours after the op) but really tired and weak. They have said it will take at least 3 weeks for the analysis to be done on the tumor, which I think is a very long time to wait.

Given what I have described here can anyone give us any more idea what to expect in the future? The stuff that worries me the most is the fact that in Britain we don't really have the option to 'shop around' for the best treatment as you seem to be able to do in the US. I think the surgeon is ok but how do we really know this?

Thanks again for any advice you can give.
Londongurl.

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17 years 1 day ago #4613 by Patricia
Replied by Patricia on topic New here....
London...was he having difficulty and pain peeing before the cystoscopy? If not i suspect the irritation occured during the procedure and i'm sure the catheter is not helping things any...just further irritation. At any rate you're going to have to wait until they stage the tumor before you know what you will be dealing with.....the size makes no difference as to diagnosis. Sometimes the large ones are actually benign. Just make sure if its possible over there with the National Health system you have that he's with a surgeon who performs these routinely. I'm not sure how it works. I know in Canada you most certainly have to pull some strings. Stay calm.
Maybe the guys can fill in here about having to have a catheter pre-op. I never experienced any pain with any of my procedures prior to the surgery. I wonder if the prostate is involved somehow? Pat

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