Hi, could you tell me how many times your bladder cancer came back over the 22 year period, and how long was the periods that you was clear before it returned, and was you treated with bcg each time.

Thank you

hi pomy only had 4 cycles of bcg 3 lots per cycle started 2yrs ago on it was on something else before that cant remember name of it sorry over the 22yrs i,d say it returned about 4 times in the early days they have kept it at bay now for about 12yrs or more if i recall name of other treatment i.ll get back to you but  it was similer liquid into bladder

hi again pomy the other treatment i had was mitomycin used just like bcg 

Hi badger 

Thanks for your reply, I had mitomycin never worked for me either, then I had 15 bcgs and was clear for 4 years then it came back, just had another 12 bcgs and all clear again, did they treat you with bcg before you were clear for 12 years

Hi all i had 15 bcj treatments & it was very painful & difficult to take

but im now 2 yrs clear & i feel good at 74 yrs old.

My advice is just stick with it & i hope you will all get the results that i got.

Ive had 4 follow up Cystoscopies which are nothig really.

Good Luck

Very good news 

Hi

I thought I would add my experiences to the forum as well, for anyone else who is suffering from the dreaded aftereffects of BCG Cystitis. I'm 59 and was diagnoned last year 2019 with a non intrusive bladder Cancer after falling down a WW1 trench on a film set and started peeing blood. I went to my GP who after first giving me a treatment of antibiotics sent me for a flexible cystoscopy at the local hospital where a small florette cancer of about 15mm was discovered. Within three weeks I was operated on and had a TURBT and a Biopsey of the tissue samples taken. Thankfully I was confirmed as having a non invassive bladder tumour but I had a high grade 3 T2 Tumour and the Consultant also took samples from another area of concern!!! 

After the TURBT I spent the next four weeks recovering and peeing various amounts of congealed blood, quite an unpleasent experiance and quite painful. Like the rest of you all, I suffered from the usual Pain, Urgency and Frequencey for which I was advised to take paracetomol. This was next to useless for the pain and I had some prescription Co-Codamol tablets which I used and found that it reduced the pain and disscomfort by about 75%, making life much more tolerable. 

Then I started the dreaded BCG Treatment, the first two or three instilitions where OK and after about two days I was back to normal, but as the six weekly treatments progressed the Pain, Urgency and Frequency got worse and lasted longer, usualy up to five or six days. I carried on taking the Co-Codamol Tablets (30/500) which helped enormously, but they are prescription and you must talk to your Doctor / Consultant before taking them. They can also be addictive, so please be careful.

After the first six week treatment I had a three month break and I was absolutely fine by the end of it, peeing normaly with no pain and sleeping the night through. Then came the next three BCG Instilitions, the first one brought back the Pain, Urgencey and Frequency and as the three weeks progressed it got slowly worse, including getting up six or eigth times a night.  My Cancer Nurse told me that she was very concened and that BCG can actualy destroy the bladder in the long term and ruin your quality of life and she noted that on my records for my consultant. I hoped that the Pain, Urgency and Frequency would subside like it did previously, but unfortunatley it got worse requiring several visits to the Consultant and a course of antibiotics which didnt work. My pee was very cloudy and had several peices of mucuse or bladder tissue in it and I was told this is normal and it would go away over time, which it has to a greater extent. My pee is now clear, with the odd bit of tissue in it from time to time, but I still today get up three or four times a night and have that Urgency and Frequency and from time to time pain as well.

I then had another flexible cystosocpy and a biopsey (the second since my Op) and within 48 hours the pain had subsided enormousley, although I still had the Uregency and Frequency. My Biopsy came back at Xmas clear again, fantastic news and a nice pressie from Santa. I was then prescribed "Betmiga" 50mg tablets to reduce the acidity of my urine which after a day really helped, although at £35 a packet plus the Prescription Fee is a bit steep for a monthly dose. I've stopped using them after the first month. I was also told by my Consultant if it got unbareable to go and buy womans Cystitis Relief medication from the local supermarket, as its over the counter medication. I noted that it shouldnt be used by men but it works and reduces the discomfort and pain when urinating and I dont use it much, but always keep a packet in the car and a packet at home, just in case it flares up again. 

I have recently had a letter from my consultant telling me that after a confrence with his fellow Urologists that I'm going to be taken off BCG and put onto something else due to my reaction, which is a cumulative effect of the BCG which will be administered in May this year.

For what its worth and for the record, on a bad day I find I have an intense burning sensation along my penis while urinating and I also have a slow rate of flow compared to a year ago as if its being restricted somehow, as well as a deep pain between my prostate and the valve that opens and closes the flow. I particularly find that it hurts the most when I finish peeing and stop the flow and the valve bit stings for 5 seconds or so. Ughh. 

I have found that by diluting the acidity of my urin by drinking lots ot water during the day and not drinking cafinated drinks like coffee and tea, helps a lot. Make sure to drink the water at regular intervals during the day, but make sure you know where the nearest loo is where you are working or traveling. I can currently go for a couple of hours without the need to pee but in the car, I carry a small seal topped plastic cup that if I'm caught short I can pull over and use. Remember that peeing in public in the UK is a criminal offence.

I do hope this helps some of you and please keep posting anything that you might discover helps. One previous contributor on here sugested that acupuncture helped him enormously, I might have to give it a go myself if it gets really bad again.

Since I have had bladder cancer I have been very encouraged by the number of people I have come across that have also had it and have survived it. YeeHaa. One gentleman has had it for twenty years others for ten or fifteen years, but all said to stick in there and go the course. Wise words indeed and who knows what cures are in the pipeline. Reading some of the contributers on this forum I feel very lucky as at least I dont have that much pain that I would ask my consultant to remove my bladder. To those of you that are like that, I'm so sorry, I know its bloody agony, Ive been there. Maybe getting a second opinion from a Harley Street Specialist Urologist would be money well spent, if you can afford it. 

Good luck everyone and remember we are the lucky ones, we found the Big C early and get to live, others find it to late and its incurable. 

Jon

Hi Jon

just to let you know cancer patients get free prescriptions on the nhs just ask your gp for an exemption card.

good luck

pomy

hi james just asking i have had the initial 6 weeks of the BCG then another three maintenance was agony all the way through (passing razor blades when i went for a pee ) had a great team to do it apart from the pain i was supported , just yesterday i had a cystoscopy to check the bladder which is still inflamed and the last treatment was in august think the nurse made a hasty mistake that day by carrying the treatment so fast i felt everything in pain during the procedure .(not nice )where as elaine the nurse that did it for me for the six weeks had no problem but had to go on maternity and she took her time bless her.

Not as brave as yourself with the treatment hat of to you for enduring that length of time .

i was just wondering what the mechanics involved and and is it easier for you now ?