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Bladder cancer Post BCG overactive bladder

BigG85
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Hey guys, 

 

Im Garry and was diagnosed with bladder cancer in february this year age 34, I had my firdt turbt followed by 6 instillations of BCG treatment following which I didnt have a great time very frequent urination and spasms this passed about 2 weeks following my BCG and was bad but tolerable.

Results back as high grade NON muscle invasive

A few weeks later I had my routine cystoscope and there were areas of suspicion so off for another turbt which went well the biospy revealed no signs of cancer.

Started bcg again around 6 weeks ago by the third instilation i wasn't able to hold the treatment for the full 2 hours tapping img out at about 1h 10 mins, the usual followed very irritated bladder peeing all the time but nothing i couldnt cope with but as time passed the symptoms worsened

Im opening my bladder as oftern as every few minutes when there's anything in there and when its empty i get horrific spams and blood and still urges to go.

Visited doctor who did urine culture and perscribed antibiotics which did nothing to help a day before they were due to finish i wasnt doing too well lots of spasms and pain literally no sleep some nights others i was lucky to get 30 mins before having to urinate this culminating in my partner phoning 111 for advice and me ending up in an ambulance long story shirt more tests more antibiotics and still no help i was at my wiys end.

In eventually got an appointment with my urologist yesterday who perscribed yet more antibiotics and 2 types of medication to help spasms which seem to have helped a little with the pain but the frequent urination just won't quit I literally need to urinate between every few minutes and every 15 minutes very occasionally an hour if I fall asleep.

Im at my wits end with both being tied to the toilet and lack of sleep to the point where its really affecting my mental health has anyone else expirienced this abd can help reassure me things will return to normal at some point.

Sorry for the rambling post i needed it off my chest for referance ive been to the toilet 6 times while writting this post.

 

Side notes

I'm drinking just water

Avoiding foods considered irritants

Stopped smoking

  • Welcome to Cancer Chat Gary, although I'm really sorry to read what you're going through at the moment. It sounds really, really, tough.

    Hopefully some of our bladder cancer members will see your post and be along soon to offer their support and advice but do feel free to join in on any discussions you find that are similar to your own when using the 'search forum' option in the purple bar above.

    You may also be able to find others in a similar situation through the charity Fight Bladder Cancer.

    I know there's not much I can say that can make this better but I hope it helps to know our community are here for you and will do all they can to help.

    Kind regards,

    Steph, Cancer Chat Moderator

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    sorry to hear you are having such a bad time with the BCG treatment. Like you I was also diagnosed with bladder cancer and in February 2017 I had surgery to remove the tumour. A TURBT followed by 6 sessions of BCG because I was told the type of tumour was known to return. What worked for me was reduce my fluid intake from about 8pm the night before the BCG treatment and just have a round of toast for breakfast on the morning of the treatment. Having had the treatment and made my way back home I then waited for 90 mins before drinking a glass of water. By the time that water found its way into my bladder and diluted the BCG the 2 hrs were up.The diluted BCG then causes less inflamation to your pipework as it comes out.One of the head nurses treating me told me that the BCG must be in your bladder for a minimum of 90mins to work and anything over that is a bonus. It is very hard I used to hover by the toilet because sometimes I got only seconds notice that i needed to urinate.Once your 2 hrs is up also try drinking more water to help flush it out. I managed to complete the full 3years of treatment finishing up in November 2020 and a cystoscopy on DEC 19th 2020 gave me the all clear. BCG treatment is now finished I just got to have a camera check up every 6 months. I also found it did get easier as it went on. Try to continue with the treatment as it is well worth it, its better than having your bladder removed

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    Hi Gary,

    Sorry to hear of your diagnosis. How it everything now? 

    What made you go to the doctor's? What were your symptoms? 34 is such a young age for BC.

  • Offline in reply to daniels51

    hello danial51

    Good news about your recovery. Can you tell me what time of the day you used to get the BCG treatment. 

    My husband has just been diagnosed unmuscular stage 3 and he will start his treatment in 2 weeks. He is going to try the same way you used to treat yourself after you got home from the hospital. He will be getting his treatment after 12 noon. It just seems a long time for him to wait to have fluid from 8pm the night before. 

    Anything to make it easier for him as he is 81.

    Thankyou

    Sylvia

  • Offline in reply to renny

    Hi Renny sorry to hear about your husbands diagnosis. I used to have my treatment at approx 9.30 to 10 am. The very first treatment they will probably ask him to stay on the ward or treatment suite until he has emptied his bladder after the 2 hours so that they can monitor him. Having done that first session ok. The next time I was allowed to go home as soon as the BCG was put into my bladder. I was also told the BCG that they use is a modified TB vaccine. Perhaps after the first session they can book him in at an earlier time. The BCG is apparently very effective. I finished my treatment about 18 months ago. Now I just have an annual checkup  with a camera. Due one in a few weeks time. Good luck and come back if there's anything I can help with 

  • Offline in reply to daniels51

    Thankyou so much for replying to my question. He has been told that the first vaccine he has he as to go at 8.30am and stay till he does empty his bladder. It takes us about 50 mins to get home from the hospital so his cancer nurse will more than likely let him out so he can empty it at home. I must say my husband is taking all this in his stride. Me, on the other hand, feels sick to my stumach with worry. I will let you know how he goes on when he gets the first one. Many thanks again

    From Sylvie

     

     

  • Offline in reply to daniels51

    Hi again for got to say good luck with your checkup. Let me know how it goes 

    Sylvie Renny

  • Offline in reply to FlyingCatfish

    Hey there sorry for the late reply hadnt seen the email notification, my symptoms were frequent urination and lots of blood in urine like cola coloured,

     

    For anyone checking in on my previous symptoms they finally passed after around 7 months BCG treatment was stopped due to my bad reaction to it which scared me but i couldnt continue.

     

    Thankfully i am still clear had a couple more turbts to check suspicious areas which turned out to bd inflammation remaining from bcg all still good and feeling more or less back to myself ️

  • Offline in reply to daniels51

    Hi Danial,if you had your checkup how did it go. My husband had his BCG postponed as he had to have a stent out but know he has been given his 6 week BCG and they are 10am every Saturday so he will be doing the same as you and no drink after 8pm the night before. His first date is on the 28/5

    fingers crossed. 

    Renny

  • Offline in reply to renny

    Sorry for late reply been very busy having windows replaced.  I haven't had another check up yet but it is due in next couple of week. Hope  your husbands procedure goes ok. 

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