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Water you were required to drink before therapy
After Proton beam therapy I have serious bladder issues. I always drank a full glass of water before heading for treatment then a 30 minute ride. I can't barely make it to the bathroom if I pour a glass of water. They have me on this medication Myrbetriq which helps but it's a $100 a week. I now have to wear diapers for leakage. Do they retain the cat scan data from the treatments where I could check if my bladder was actually full. Other people have told me they always went to the treatment 1/2 hour early and were sometimes taken out of the machine because their bladder was not full.
Did the hospital contribute to this problem by not being responsible if my bladder was full. Bladder leakage is rare for radiation therapy.
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Hi Narus,
Your complaint was one of my biggest concerns during my treatment over the holidays. I lost 12 pounds over the two weeks I was being treated through dehydration and fasting. I avoided drinking as much as possible because it was so hard to comply with the requirement to drink 16 oz of water 1 hour before treatment. I had the same problem as you mention and I wanted to be empty before drinking. Dehydration caused serious constipation and I fasted to combat that.
After the third treatment, of five, I began to have real problems complying. I felt like I had an untreated urinary tract infection. I always felt like I had to urinate, it hurt like the dickens to do so, and production was small. Trying to hold my water through the procedure was very difficult and distressing.
Here are some tips, some of which I acquired late in the game. The urinary infection feeling was in fact a side effect of the radiation. Think sunburned urethra. It happens that there is an over the counter drug - phenazopyridine hydrochloride, that is used to treat urinary pain for those with infections. The most common brand is Azo and it is available at most drug stores. It makes you pee orange but it really helped me with urgency and pain. Take it with Ibuprofen.
I don't know anything about Myrbetriq, but a cheaper prescription drug that was prescribed for me is tamsulosin (Flomax) which helped with frequency. It is prescribed for once a day but my urologist said I could double the dose safely if I needed to. If I take two, I get dizzy spells which is a known side effect. But, being dizzy vs. losing bladder control on the table is an acceptable trade off for me.
Finally, there is a penile clamp. You can wear it during therapy or any other time you need it. It's a bit uncomfortable, but it works. They were available at the Mayo Clinic pharmacy and do not require a prescription.
Scan data is retained for quite some time however, I'm not sure that is helpful in your case. Urologists use ultrasound routinely to measure retained urine in the bladder. However, it can show up in a CT scan or MRI. You are given a scan of some kind before every treatment while on the table before using the beam. They are comparing the distension of the bladder to that measured during the simulation, I believe. That is how procedures can be interrupted and postponed. If that data is readily available to you I can't say.
This information probably comes too late for your benefit, but I'm recording it for others who may have time to prepare and are searching on this topic. If I had to do it over again with what I know now, I would acquire and start taking the Azo before the first treatment. You will learn by the color of your urine when you need to take another dose. If your urologist thinks tamsulosin might be helpful I would start taking it a couple of weeks before treatment. I'm still taking it as it helps with nocturia.
My experience was made worse by the fact that over the Christmas holidays both Mayo and many drugstores are closed. I had nowhere to turn quickly for help. I had no problem until after the third therapy and your mileage may vary.
After three weeks my PSA dropped from 13.4 to 6.2. ADT was contra-indicated in my case so this result is from the radiation treatment alone. If I had been better prepared, the whole treatment would have been much more comfortable. Good luck with your treatment and to all of you who still have this before you.
Flowmax is a med used to relax your bladder and prostate and make it easier to urinate by relaxing your bladder and prostate. Myrbetriq is used to treat over active bladder. At this rate it is going to cost me $600 for diapers. Sometimes it is so bad that if I pour a glass of water I have to run to the bathroom and do not always make it.
What is interesting is I discovered on my own that I had low testorone. You cant have a PSA of .01 and not have low testorone. After getting TRT I had no problem with leakage or sudden urges. But now it seems to be back although I feel good. I also lost 46lbs on this thing called the Carnivore diet. This pushed my Testorone up and I exercise regularly. I am 65 and actually feel great aside from the bladder issues.
What I am wondering is if I can sue the hospital because they raded me even if my bladder was empty.
I have talked to a number of people and they were taken out of the machine before being treated because their bladder was not full enough. I have a new doctor but do not see him till May
As far as Myrbetriq they were charging $400 dollars for 30 tablets. I had my prologist give me a physical prescription and a Canadian pharmacy filled 90 for $295.
If you are taking expensive drugs check out Clayman Pharmacy in Canada
I have lots of tamsulosin I have had trouble urinating for 20 years and have tried it and it did not help for long. Going to the hospital on Monday and try and get my cat scans. So much of this just does not make sense