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All clear for 12 years now
Haven’t posted in a long time, but thought I would to give encouragement to those with non-invasive bladder cancer. I recently had my annual cystoscopy and remain all-clear since my last (and only) recurrence 12 years ago. Initial tumor was 14 years ago, followed by recurrence of same type (low grade papillary) two years later. I had a full course of BCG, which at that time was 2.5 years. Part way through the treatment the BCG concentration was reduced because of side effects. Last year and this when I had the annual cystoscopy the urologist said I really didn’t need annual check-ups any longer since I had been cancer-free for so long and that I could stop altogether. As an interim step, I’m going to go to a 2-year schedule, which he said a lot of others in my situation opt to do before stopping check-ups altogether. He noted that even if I did have a recurrence down the line, it was highly unlikely to be high grade.
Wishing all you other blc “warriors” well!
Ann
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.11 Replies-
Sorry to hear about your issues….I can truly sympathize! I have a similar issue, but not from bladder cancer treatment. I suffer from post-cholocystectomy syndrome which started about three months after emergency gallbladder surgery. For me, Questran is a miracle drug but I do need to take it EVERY DAY. The few times that something came up and I forgot have taught me to NEVER forget!!!
Could it be that something other than the bladder cancer issues brought this on? From all the postings I have read on this Forum, diarrhea is not a common problem. I second Alan’s suggestion for a gastro consult.
You will figure this out!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks Alan … you maybe right, it’s worth a shot … I might ask my doctor if I can do a test … stay well… Ken
Hope you get an answer and relief. All I can add is I know many people that have acquired food allergies later in life. Including lactose intolerance, MSG allergies and gluten issues. Maybe some else will have an idea.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Thank you Alan … I’ve never had any allergies before the operation … every time I ask my surgeon about the diarrhea attacks he says …”are you taking your Question” it sure works but I wish I could find another solution … I go back in again soon for another cystoscopy so I’ll ask again … do you have any problems in this area … sometimes I can eat basically anything and then eat the same thing a day later and bingo off I go again … I was hoping someone may read this who has a similar problem … I’m certainly happy to be alive and basically pretty well at 71 …. cheers Ken
Welcome!
The only guess I’d make besides something you eat is possibly some kind of bug you may pickup. Maybe trying a gastroenterologist together with your URO in a consult? How about a dairy allergy? Gluten allergy?I am just simply asking questions triggering more thought. Hope you find your answer.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Hello everyone, I’m from Australia … My bladder cancer was diagnosed going on 4 years ago coming this Christmas … mine started as a urinary tract infection with a slight stinging when I had a pee … it went on for a few days before I decided to go to the doctor as you always think it’s something else like soap or shampoo etc and I’d never heard of a man with that sort of infection … the doctor gave me antibiotics and said it should clear up in about 5 days … on the fifth day I peed out a substantial amount of debris … I was immediately sent for a CT scan and within an hour the results were back and I was heading to the hospital … my tumor was in the wall of my bladder and about 50mm and as thick as my little finger … the cystoscopy showed up how bad it was and the surgeon said you have maybe 4 months or a little longer without an immediate operation … my surgeon was Dr Geoff Coughlin at the Wesley Hospital in Brisbane … I live on the Gold Coast an hour away … in my eyes Geoff is a genius … To say it wasn’t and easy recovery would be an understatement but here I am nearly 4 years later and going well … like other posts I’ve been reading I can hold out for 4 hours or maybe 5 hours sometimes and you can forget to go but when it backs up into your kidneys there is pain so I try and stay to 3 to 3.5 hours before going to the toilet especially through the night … I don’t have to wear pads but make sure I go to the toilet at least twice before going to bed … my main problem is definitely diarrhea attacks … if only I knew what brings it on … I can be good for 2 weeks and then it hits me and I can go up to 7 times every half hour … If only I knew what triggers it … I’ve tried not having garlic, tomatoes, potatoes, chilli and on it goes trying to find the answer what it is … my surgeon prescribed QUESTRAN LIGHT … a powder in a sachet and that stops it in a couple of hours … he said take nothing else from the pharmacy … I now take one sachet a week or maybe two within the week but too many can cause constipation … after 4 year this has been the biggest drawback but a far cry from the beginning when I could go up to 20 times a day … I think I spent more time on the toilet than in bed … I can finally travel again but take precautions when staying in hotels etc … Finally I’d love to hear if you have a similar problem and have you resolved it by not eating a particular food etc. cheers Ken
Happy for you. It provides inspiration to us :)
Great news and congrats! It’s a good inspiration to read about these success stories.
Glad all is well. Don’t be a stranger!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
That is GREAT NEWS, Ann! And it is wonderful to see an old friend visiting the Forum….
I am 15+ years out and my Uro still wants annual visits. He says “forever.” I will comply.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
So great to hear, Ann!!
Anita and Doug
Anita
Forum Moderator
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