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New here….
Hi everyone I am new here, and have to say that I guess it’s not really something to celebrate. My Dad has bladder cancer but at this present time we don’t really know any more than this (we haven’t been told what stage or grade the tumor is at). He has been kept waiting for over a month now for an op to remove a tumor and see what else is there, but it may be that they can’t even do the op on the 29th of March because he currently has a water infection that is being treated by antibotics at the moment….
I suppose I am here really more than anything, to get other people’s takes on what we should prepare ourselves for… He has been lead to believe (or is choosing to ignore the facts?) that it will be a case of take out the tumor and that will be that. Maybe it’s his way of coping, but this is pretty unlikely isn’t it? He is in his early eighties and otherwise fit and strong for a man of his age.
Any advice on what to expect/how to help him cope/How we can best cope would be much appreciated.
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16 Replies
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Sorry London….the message board went on the fritz for a while and i just now saw your post from May 6th. I’m so sorry it took such a long time for pathology…it hardly seems acceptable to take a month for a diagnosis. Indeed Squamous Cell is rare…its seen more frequently with spinal patients who have to use long term catheters that cause irritation to the bladder lining or in third world countries by a parasite. I hope by now you”ve gotten the results of further testing? Please keep us informed and we’ll try to help you and your dad through this………..Pat
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Hi Londongirl…..sqaumous cell carcinoma usually happens when transitional cell carcinoma goes bad…constant irritation of the bladder….it happens a lot more with spinal patients who have a catheter which causes the irritation. It is rare here but cystectomy is the only course of action. Because of your fathers age i believe they would only do an ileal conduit…an outside bag. Its a shorter surgery and a bit less invasive. I’m so sorry he’s so uncomfortable….Is he on any kind of anti-inflammatory drugs or peridium to lessen the pain? Pat
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After a VERY long wait, we have finally been told this week that Dad has a very rare type of cancer and needs to have the bladder removed completely. They will only agree to do this after they have done another scan to check that it’s not infiltrated the bowel, something which didn’t show up on the first scan. I had a look on here at the name it was given (Sqaumous cell) and it all sounds way too scarey to even comprehend. It seems to me like all of this should have happened a lot quicker than it has, given the severeity of it, and I am really starting to feel very furstrated that it has taken so very long to hear that he is so seriously in trouble. Thanks in advance of any responses, and thanks also to anyone who has replied so far…
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Hi
Cant really help with the symptoms just make sure he drinks plenty and avoids infection.The temptation is when it hurts to pee you try to reduce fluid intake to reduce how often you need to go then you end up with an infection and things are worse.
I am in England too and got my path results in about a week so I would be nagging.They can get those results quicker if they want to.Anti anxiety medication may help although its hard to suggest it.
Dont forget to look after yourself and the rest of your family your Dads going to need you all in the coming months.
Love Claire.x -
Hi LondonGurl
If you go to google.com and search for transurethral resection, many articles will show up, though most are discussing transurethral resection of a prostate tumor (much more common than bladder tumors), it’s the same surgery. The same scope does the looking, resecting, and sucking up the pieces of tumor (ugh). I saw a film of it once at a conference and almost fainted, it was gross. But it’s a wonderful invention we couldn’t do without.
What about an anti-anxiety medication for this difficult period, until he heals, at least?
I don’t know what to tell you about the ongoing irresistable urge he feels. Ask the doctor if there are meds to help control it, I’m sure they exist.
Remember…this too shall pass.
Wendy -
Well i never figured out how a 8lb baby got out of me either…….all i know London is that they do it…some scrape, some lasering and they get it out!! I don’t know what to say about your dads symptoms other than i’ve read other men seem to have the same irritation with the TURB….i guess with the women they have a shorter route to travel as our urethra is shorter and we don’t seem to experience any pain after the procedure or at least shouldn’t. Have they checked him for infection? Pat
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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. -
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 2006London…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
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
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.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
Hi Rosemary, Patricia and Tim,
Thanks so much for your quick responses. I already feel as though I have more support from people ‘in the know’ from reading your responses than I have done throughout this thing so far…. much appreciated.
Yes we are in England. Mum and Dad are based in Essex and I am in Oxfordshire. Because of the two hour journey and the fact tha I run my own business, unfortunately up until this point I have been unable to be present at his appointments, although my sister has been able to attend with them. It is frustrating though, having to hear the diagnosis second hand, and as far as I can ascertain so far he has had the cystoscopy and blood tests. He has been fitted with a catheter as he was experiencing extreme pain whilst peeing and not being able to pee properly (this is how they originally discovered he had a problem). The catheter seems to have caused no end of problems, including a water infection, which we are praying will not stop the surgery going ahead on the 29th March.
I will be back from my parents place probably by Sunday and should have a much clearer picture of what we are dealing with hopefully.
Best regards to all
Londongurl.
Londongurl
I am in Bristol (although i lived in london for a decade or so). I have to echo the above re; knowing grade and stage of illness but it could well just be a case of removal, testing the tissue sample to ascertain the nature of disease (if there is one) and then a watch and wait. Or it may be something more proactive like a chemical of some sort to slow any future growths down. I’ve heard tell that these things move more slowly in elderly patients although only second or third hand. The main thing is to try and keep an open mind until you have some hard facts and try not to be too stressed. Although that’s pretty hard. Please keep us posted on what’s going on and certainly if they give you any terminology you don’t understand Im sure someone here will be able to help. Ive been with this illness for 14 years. I’ve certainly been kept waiting for over a month at times with known tumour in me. I’m guessing maybe they did a flexible cystoscopy and saw something and now want to get him under general anaesthesia to remove it? If thats the case, they can usually guess quite a lot about the nature of it from looking at it through the flexi scope. But getting it out and into the lab is best. I wonder if that is why he has the infection – because of the flexi?all the best
tim
Just wondering London what your father has had done? Did they do a cystoscopy…a CT scan……..How was the diagnosis of cancer of the bladder made if they haven’t gone in there yet? Pat
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