bladder cancer

[jodieann]

I was 31 years old when diagnosed with bladder cancer, I am now 41 and still have re occurences. I am one of the lucky ones where it hasn't spread anywhere, They call it TCC grade 1 cancer. My last surgery was on the 8th April 2011, I also had 1 installation of mitomycin c which my bladder took a turn for the worse. I was in agony for 3 months on the loo every 5 - 10 minutes voiding about 30- 50 mls. Although I am slowly getting better the doctors cancelled my chemo treatments and said I can't have the mitomycin c again. This now gives me know choice if it returns to have my bladder removed. They tell me lots of things, the bladder ulcerated, my ct scan shows cystitis, I was put under on the 1st July 2011 to have a cystoscopy, although I have to wait 1 month for a post op for results, my discharge letter states scarred bladder and low capacity. I don't seem to be getting any answers from the hospital about my complications at all. I have had the run around for 10 years, I just wish they would tell me the truth....

[#2]

Hi oh my godness thats so sad to hear!! i am only 20 and last month was diagnosed with bladder cancer also! i see u said u had chemo even though it was only grade 1??? i have grade one also but have not been told anyhting about chemo? did u only have to have it because it came back after ur first op to remove it?? where do u live? i live in Bunbury WA

[jodieann]

Hi I have had it reoccur about 9 times. I had my first chemo treatment in 2006 and was clear for 4 years until april this year. I live in adelaide. I don't think the hospital is being truthful with my complications. I had been fighting it for 5 years before they even considered chemo, now it has been 10 years they are considering taking my bladder, but I really don't want that yet.

[maggie1]

I have low grade bladder cancer and live in the SE of Adelaide. Service not available down here. I have had several cystoscopes done. Doctors talking about removal of Kidney. My questions is no support iam on benifits they expect me to to travel to Adelaide pay for accommodation. no support will not fill in apprioprate paperwork stating it availible in SE. I will be discontinuing treatment as I cannot afford to travel for treatment. Any thoughts on this matter.

[Paul_D]

Sorry to hear your all having problems in S.A, I have high grade bladder cancer with C.I.S and large tumor removed. This has been my life for the last 12 months or so, I have also had three lots of BCG treatment and 4 cystoscopies in that time. I live in Hervey Bay QLD and need to travel to Brisbane (4 hours) for my cysto's and major op's but BCG I get localy. There is a QLD government system here that allows me to claim my travel costs back and the Cancer Council have a motel in Brisbane which is free to me as they claim the cost from the QLD Gov, I would contact your local urology liaison nurse to see if you have this system for rural residents in your state. I have also had lots of problems getting information from the urology team and I can vouch for other countries where they also have the problem. I ask as many questions as possible at all times and have even written them down on my hand prior to going into surgery and doctors write the answer down on the other hand so don't be afraid to ask and keep asking. I am a pensioner and have limited funds and have so far not paid for any treatment and have received the best, good luck.

Love & Best Wishes to all

Paul D 

[Gab_CCNSW]

Hi @maggie1

Have you been told about the Patient Assistance Travel Scheme?  This is a financial subsidy program for people who have to travel more than 100kms to receive medical treatment. For the South Australian service, their phone number is:  1300 341 684

Hope they give you some help.

Gab