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Bladder damage after BCG

xyster
Posted by
Hi all. First post on here after some advice with regards to my Dad`s bladder cancer. He was diagnosed two and a half yrs ago and initially had 2 yrs BCG treatment after they had took out the cancerous area. It was only the surface type cancer and hadn`t gone into his muscle wall.

Anyway, after each course of BCG treatments his recovery time was longer and he had more pain. He was frequenting the toilet alot but hardly passing anything. They ended up doing a TURP procedure to ease these symptoms. This was a yr ago.

They then told him he would be having another year of BCG`s as they were going to 3 yrs of treatment instead of 2. He has had one of the treatments for this 3rd year but was that bad that he had to leave it 2 weeks in between each dose instead of the usual 1 week, so the 3 treatments took 6 weeks!

He is still at the stage 2 months later where he is going to toilet every 10 mins all day and around 18 times during the night (11pm till 7 am). They say it is because the bladder wall muscles are over sensitive due to the BCG treatments and whenever he gets any liquid in there the bladder is wanting rid of it.

Seen the consultant today and I asked how likely it is that this will calm down if he foregoes the last course of BCG`s and lets things settle for a few months? Answer was that it was unlikely to calm down!!

Choice seems to be bladder removal or carry on as is (not an option - he is at wits end and looks physically exhausted).

Has anyone experienced this damage to the bladder caused by BCG and what quality of life could he expect after having the op?

Many thanks
HarryBarb
Posted by

Hi xyster

I'm so sorry to hear what has happened to your dad's bladder after the BCG treatment. My husband had his bladder removed last year due to advanced bladder cancer.
Your dad may have 2 options here. Sometimes they can make a Neo bladder out of a piece of the colon, which stays inside the body. This has the advantage of being able to pass water reasonably normally, although it has some disadvantages too. Because it is made from Colon material it exudes the same goo that the colon does, so the patient has to be able to self catherterize to clear it every so often. They also have to kind of squeeze their tum to pass water, as it can't work exactly like a bladder. The advantage of this proceedure (if offered) is no urostomy bags.
The other option is to have a urostomy with a bag attached to the torso by special glue, which is what my husband has. He has had very few problems wearing a bag. A couple of accidents in the early days with things coming loose, and one faulty batch of bags where the glue was no use, but apart from that it has been OK.
I'd like to say he leads a normal life, but unfortunately as I said his cancer was very advanced so his cancer has spread. It is that which prevents life being normal, not the urostomy.
I presume they have checked your dad's prostate, and haven't overlooked that because of presuming its the BCG? Just checking!!
Please feel free to ask anything your not sure of. You can pm me or request as friend if it helps.

xyster
Posted by
Henrietta,
Thanks for your reply. They did a TURPS, which is an op where they take like an apple core from the prostrate to widen it. My dad had an enlarged prostrate anyway which wasn`t helping hence that op being done. They said that he may have some problems for a while until his bladder `re-trained` itself. As I said though, this has gone on for 2 years now and his quality of life is not too good. It seems that the BCG treatment has certainly made sure there has been no reoccurance of the cancer patches, but has damaged his bladder to the point that it seems likely that it will have to come out anyway.

My personal thoughts are that even if he can wait for, say, 6 months to see if it settles down, and it does to some degree he is happy to live with, the high rates of reoccurance this cancer has could well mean that it returns in the future. This would then mean another 3 yrs of BCG treatments and would surely mean his bladder would not recover a second time.

I am trying to gather as much info on `life without a bladder` so he can make a more educated decision on which way to go.

I do not know which op they would offer him. The consultant has mentioned the op as being the only alternative if the bladder does not settle down and thinks it is highly unlikely that it will do so. He has had two different types of tablets as an alternative to normal anti inflams both of which gave him more pain so were stopped.

I am going to see if there are any herbal/natural remedies to help with a sensitive bladder. Also I am looking for something he can take to bed so he does not have to get up out of bed and go to the bathroom 18 times a night. Any lttle things may help him get a little more sleep and lengthen his time between visits to the toilet.

thanks again.
HarryBarb
Posted by

Hi Again

Speak to your GP or Mac nurse. They should be able to get him the usual "bottle" for night use. The sort with a wide neck and a flat bit, so that it doesn't knock over easily. That at least will help, so that he doesn't have to keep getting out of bed and going to the bathroom. I know how bad that makes things, because of how my husband was before he had his bladder removed.

Hope you find all the info you need, but don't go scaring yourself to death!! We've all been there too!!

Best wishes

JayJay
Posted by
Hi Xyster
So sorry to learn of your dad's situation and also sorry to crash your thread but I wanted to mention a product which might help him have a more restful night. He can't possibly build up his strength when he's in and out of bed so often every night.
There is something called a urinary sheath which is like a condom but leads to a tube and then into a bag which can be emptied/changed periodically. My late husband used this when he was bedbound in the hospice and it enabled him to retain some dignity. There are several manufacturers and types (my hubs had Convene) but your Mac/District nurse should be able to help with this. Urinary sheaths don't suit every man but are perhaps worth mentioning to your dad's health professionals. As I understand it, the sheaths need to be attached and changed by a trained person and this might involve having a daily/twice-daily visit by the nurse to his home but it's certainly worth investigating.
I hope your dad is soon more comfortable.
Best wishes
Jen x
red squirrel
Posted by
hello xyster, so sorry to hear of your fathers situation,dificult i know,i have heard of many bla/ca patients haveing the same type of symptoms post op and through courses of bgg,after many turbts,recures ,and chemo i also suffer from these difficultys.but its important to remember that your father sounds like he,s still on the bladder sparing treatments which is good no matter how difficult you may feel this is,the fact that his consultant would like to go on with bgg is also a good sign,although if the frequency issues does not get any better ,then it might be an idea to ask his consutant if your father would benifit from a 6 week course of chemo [mytomicin c] which has a proven record in combating bla/ca
as i,m sure you know bgg is a form of imunetherpy useing a bacterium which stimulates your fathers own immune system,sometimes people have adverse reactions to this which means they may need to take a break or lower the dosage or in some cases switch to mytomicin chemo agent
there may of course be reasons why this has not been offerd as an option before,i was dx at 44,unfortunatly many grade 1 and 2 bla/ca have a high recure rate,but that does not mean that they will automatically upgrade to 3 and then mean bladder removal,
there are the obvious things that i presume your father is doing allready,tea and coffee tend to agrivate the situation,so can some fruit juices,and alcohol
cranberry is a good ,during the day good ,non mineral water,to sip.in the morning flush the whole urinary tract and bladder with plenty of water,even though that may mean many visits
there have been times when it was pointless me leaving the toilet,and at times it seemed it would never end,thankfully in time it did,and i would wish the same for your father also.given a choice between that and loseing the bladder there is no comparrison,well for me anyway,i wish i could say that i am recoverd and in remission,i am not,its a long road ,and the fight goes on,
having said all that i can only wish you and father the very best,and hope his condition improves over time

kind regards
red

xyster
Posted by
Thanks for the replies everyone. I have spoken to my dad today and apparently he already uses a jug for nightimes (he always refers to `going to the toilet` so I took that literally). I will, however, look into getting a proper recepticle for him.
I will also mention the sheath/bag arrangement and if he is interested in one of those we can look into the possibility.

Red Squirrel, lots of good advice in there. I am not totally sure about his drinking habits apart from I know he drinks mostly sugar free fruitjuice cos I have bought it for him. He does drink the odd coffee (caffiene free) and has recently mentioned trying cranberry juice again.

My dad did not know exactly what the BCG treatment was until I explianed it to him. I mentioned the other choices but he has already asked the hospital if there were any alternative treatments and was told that the BCG is the only one they do!
He has only got one more treatment session left, and is of the opinion that doing this last one will deffo see his bladder problems beyond the point of any beneficial improvement. He can barely manage now so is unwilling to make the problem worse with another round of BCG sessions, which I can understand.Obviously the consultant said that the benefit would be stopping the return of the cancer. He has had no return in 30 months tho.

To me is seems a straight choice:-

1) Have the final BCG and then almost certainly end up having his bladder removed because of the damage the treatments have caused.

2) forego the last treatment and hope that the bladder calms down given time (we are looking into some drugs available that relax the bladder muscles- often used for people suffering incontinence/urinary urgency etc and also any herbal drugs/juices, anything to give this option the best chance). The problem here is if this does happen in a few months time and then they find the cancer has returned on his next check up, or subsequent ones, then he would start the whole cycle again and would his bladder cope with another 3 yrs of BCG sessions???

3) have the bladder removed (don`t know which procedure he would be offered as yet). This would also eliminate the chance of the cancer returning.

At the moment he is hoping for option 2 but looking into the reality of option 3.
red squirrel
Posted by
dear xyster,your father is fortunate to have such a careing son,and great effort is being put in to your father recieving the best outcome,
and i would wish that for him also,

firstly its fantastic that he has had no recures for 30 months,that in itself is very positive,if the bgg is intollerable at the moment then he can take a break,or lower the dosage ,both entirely possible,adverse reactions to bgg and high frequency do not in themselves constitute reasons for bladder removal,although an upgrade or change to carsunoma in situ may,
cutting out coffee and tea,boreing though it is can only help,and i was told to avoid orange juice and such because they can change tha alkaline ph level in the bladder,cranberry is fantastic,and i personally swear by it,...........but its a personal choice
the chemo agent mitomycine c has a very good track record in treating grade 1 and 2 bla/ca and has been used succesfully for many years,
i know there are clinics and hospitals in the usa who no longer use it,or are withdrawing it ,because there have been problems with people with bladder perforations dureing TURBTS .it might be worth asking the consultant or cancer nurse if your father would be a good candidate for this treatment
i have had it many times,and from talking to other bla/ca it does,nt have anyway near the same difficult side effects,although we still get some of course,and they can take weeks and sometimes months to subside,
in closeing i would add that if the hospital are insisting that they will only offer bgg,to a man who is displaying such long standing and difficult side effects ,then maybe you could ask for a second opinion,and if nessesary go to a hospital that does offer another treatment
you wont be flavior of the month ,but your trying to do whats best for your father .........not them
its just a thought,we all have to be pro-active in research and treatment options.

i know this is a worrying time for you,and i would send you both as much strenth as i can muster

kind regards
red
xyster
Posted by
Red,
Thankyou so much for your kind support and useful advice. I will make a note of your advice and pass the tips on today. Sorry for late reply, been working long hrs last few days.
Sylviapenny
Posted by

Hi xyster. I had 2 years of BCG and had one course in the 3 rd year and then was due another course last month which after talking to the nurses it was decided not to have as I was suffering very badly with pain and frequency. I was going on average 30 times day and night so like your Dad I was exhausted as was like this for a year. I have been having repair treatment now every week for a year which has helped a bit but I found the only thing that helped a little was diet. Keeping away from anything that made my urine acidic which is a lot and makes food very boring especially if you love spicy tasty food! I had a shoulder replacement operation  a couple of months ago and when I was in hospital I had a catheter as didn't want to have the frequency problem on top and it was removed after a few days and when I went home my frequency and pain were so much better. It gave me hope that it was improving but unfortunately it started to revert back after about 6 weeks. I have read several forums on CI with people having the same symptoms as myself and the treatment that seems to help them most is reducing the acidity in the bladder which makes sense so I have started taking bicarbonate of soda 3 times a day in a glass of water and it is certainly helping the pain. I am thinking of trying prelief tablets next and see if that helps. The treatment I have been having at the hospital weekly at the moment is Ialuril.