Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

2nd TURBT

Pursy
Posted by

Just got home from my 2nd TURBT. Consultant thinks he’s got the last 20%. Didn’t have chemo in after so I’m a bit puzzled by that.

I do feel a lot better this time though, not so painfull on the way home.

Pursy
rily
Posted by

Hi . Good to know you got through it ok. They don't always do a chemo wash if they think it is not necessary. A good sign. Don't forget to drink plenty of water to flush things out. Hoping for good results for you. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Wilbert
Posted by

Sounds very similar to  my husband's experience He didn't  have chemo wash after the second turbt .We were told at follow up it wasnt necessary He went on to have bcg.Twenty one bcg treatments and three years on he is all clear Looking at final course of bcg if he is clear at next check in September 

Best wishes 

Wilbert 

Pursy
Posted by

Thanks for the replies. I know I have to wait for the follow up when they have had the pathology results.

I felt really quite poorly after my 1st one but feel ok after the 2nd. I presume because they didn’t need to remove so much.

In reality how soon before I get back to normal activities? I felt I needed 2 weeks last time.

Pursy
rily
Posted by

Hi Pursy. The follow up TURBTs are normally a lot less severe than the first as usually just a mopping up job. It's recommended not to do any heavy lifting or anything too strenuous for at least 2 weeks so as not to aggravate the wound. I found I was generally ok after a day or so. It is the anaesthetic that usually makes people feel lousy afterwards and some people react to it differently. As always, plenty of fluids. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Denby
Posted by

Is there a 'normal' for how many bcg's? My husband had another papilloma at TURBT after 6 bcg's and was offered another 6 or weekly chemo [mitomycin] or cystectomy. So are more offered if there hasn't been such a quick recurrence or what? We opted for the chemo for now. It would be nice to hear how others found the side effects of the mitomycin. Eg fatigue, how bad/how long. Stinging on passing urine, urgency.

rily
Posted by

Hello and welcome to the community. Sorry to hear your husband had a recurrence after his BCG. It is not uncommon. Although I never had BCG, I have been on here long enough to read all the stories. The initial 6 treatments are fairly standard, but after that it really depends on the individual. Some people go on to mitomycin if the BCG does not work to try that. Others have longer BCG treatment and some have repeated recurrences and keep on having BCG, sometimes for years. Others opt for bladder removal. With side effects, there is no normal. Some people have severe effects which can last a long time, others have no problem with it while most are somewhere in the middle. I am sure someone will be along to share their own experiences. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Denby
Posted by

Thanks rily. Personally I suspect that my husband has had bladder cancer for years, as ages back the hospital where we used to live operated 'to improve flow and excessive frequency' and discharged him in a distressing and distressed state with the comment that 'the growths had taken more work to remove than they had expected.' Green as grass we had no idea this could be cancer and weren't told, surgeon now says this was not uncommon. It was re-worsening of the poor flow and frequency that took us back to the GP after moving. So often everyone assumes it's 'just' an age-enlarged prostate without checking further, one of our old GPs did that too. So I suppose we're 'fortunate' that as far as anyone knows it hasn't penetrated the bladder wall.

My other hunch is that the actual cause is toxic metabolites of the many meds he has to have for other conditions and has been on for decades. Supposedly each is safe but they don't even get tested in combination. Interested to know what other readers think as he has never smoked nor worked with chemicals.

Best wishes to all the other people suffering this and their near and dear ones.

Denby

rily
Posted by

Hi Denby. It is not uncommon for bladder cancer to go a long way before being diagnosed. We have seen it so often on here. It can also take a long time before presenting any obvious symptoms. There is not enough awareness out there even though it is one of the most common cancers. As regards the decades of medication your husband has been on, you may be right, but the medics would be unlikely to agree. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?

Wishingonastar82
Posted by

 I have a question for you. My Dad had his 12th BCG in April and will be having a flexi this month. He has been told that if all is well he will be going over to six monthly BCG so the next ones will start at the end of September. I am wondering if this means a flexi now and then another one before the next treatment. I’m not sure why they are doing it like this as surely it makes more sense to have a flexi now and then do BCG 13-15 and then wait six months as he will just have to have another flexi in September before the next treatments. I don’t really understand. Is it normal to have a flexi after number 12 and then another three months later before starting number 15? Does your husband still have a flexi every three months even when the treatment is six monthly or is it only when you transition from every 3 to every 6 months. 

Herothedog
Posted by

Hi Wishingonastar, glad your dad is doing ok with his BCG. Marvellous that he has remained all clear. I had doses 13,14,15 in March, a flexi in early May and luckily since this time all was clear, I have a 3 month holiday before my next flexi due in August. If all remains clear I will have my six monthly BCG doses 16,17 and 18 in September. I think after that will be another flexi in November. I expect doses 19,20 and 21 will be in March. As far as I know the flexis remain 3 monthly for the first 5 years after which they may drop to 6 monthly. As I had a little reoccurrence pop up after dose 12  I am very happy to be checked 3 monthly. Good luck to your dad hope all continues well for him. 

Herothedog
Posted by

Fingers crossed for your biopsy results Pursy. x

Wishingonastar82
Posted by

Thanks for your reply. I wasn’t sure so that’s good to know. Had hoped for six month flexis because I find the stress really hard to deal with but I can see the benefits too. So good to know that you are doing well after the little reoccurrence. Surprised they continue to be every three months for five years but at the same time the quicker they handle any reoccurrence the better of course. 

Herothedog
Posted by

Unfortunately recurrences are fairly common, but the grade of my new tumour was lower than previously, which they took as evidence the BCG was doing it's job. Also it was only 3 months since the last cystoscopy, so as you say, caught at a very early stage. I found it confusing to see any pattern to the BCG treatment at first, I felt muddled about where I was in the protocol.  Now in to my second year I feel like an old hand, though I do lose track of which dose number I'm up to To help me cheer up about a forthcoming cystoscopy I allow myself 48 hours afterwards box-set watching, eating cake and dark chocolate (washed down with a glass of wine if I get an all clear!).  

Wilbert
Posted by

My husband had a flexi after BCG 12 and then he had 13 14 15 a 6 week gap and then his flexi There was a question over wether he should have a flexi before the started BCG 13 but the specialist nurse decided it wasn't necessary

Once he transitioned to 6 monthly BCG he  had a flexi  6/8 weeks after he  completed his 3  bcg.Then he restarted bcg 6 months after the previous 3  BCG had been completed Not 6 months after the flexi 

So basically 3 weeks BCG 6 weeks wait then Flexi then 17 free weeks of relief Or maybe 15 as the letter to restart BCG usually comes 2 weeks before 

Congratulations to your Dad on getting on to 6 monthly it's a great milestone along the road

Very best wishes

Wilbert