You ask a most important question, one that needs to be answered properly.
To be honest, I was suspicious the first time with my RO right after she had developed my radiation plan (as they like to call it). She knew that I would have a suprapubic catheter in place during the entire duration of the radiation. She was in agreement with my Uro, since I had a long track record of difficult stricture issues, and knowing that radiation can cause swelling and create even more strictures. I knew from m own research, and from following the SRT journeys of many others, that the normal standard of care was to have a full bladder before each treatment.
So after she told me the "plan", I asked the right question. "How am I going to have a full bladder with this catheter in place?"
(Obviously, with the catheter, my bladder was constantly being drained as soon as any urine entered it). The RO looked at me, and said "Don't worry, I got that covered." I thought about that a second, and I said, "What do you mean, you got it covered?" She seemed aggervated, and simply answered, "I have taken that into account".
This didn't sit well with me, didnt' sound right. Based on the troubles and side effects I had endured with neck and throat major radiation 8 years prior, it made me nervous and worried. But in the end, I felt I had to trust her judgement, as she was the doctor, she was the expert, and I was the patient. So I entered a trust relationship with her decision.
Now, when the radiation began, the first 3 treatments went by without anything unsual happening. On the particular IMRT machine I was on, it indexed its position 6 times to complete one "zapping" session.
It all began to go wrong on the 4th day of treatment. As soon as the machine hit and delivered the radiation on the 5th positiion, I immediatley began to feel a deep burning deep inside me. From the laying down posiition I was in, it felt like it was coming right inside my bladder. It was an internal pain, but distinctly a burning feeling.
I reported it to the machine techs, and they said, "You cant feel anything, but report it to the doctor next time you see her."
On the 5th treatment (it was Friday now), the same thing happened, but it burned deeper and longer. It was uncomfortable lifting back off the table.
That very next Monday, I told the RO when we had our weekly check up session. I could tell she didn't believe a word of it. But I insisted. I even suggested that perhaps it was because of "scattering". That seemed to annoy her, and she said that with IMRT , there really isn't any "scattering" of radiation.
So to make a long story short, as I went through each and every treatment after that, the burning got worse and worse. It was unbearable at times, and it reached the point, that the techs had to lift me up to a seating posiition, and help me off the table. It would be all I could do to limp back to my car. At its worse, it would take 2-4 hours for the pain to subside that evening. Needless to say, I was really afraid to go back each day, as I knew I would be burned again, but felt like I had to tough it out.
Yes, each week, I would tell the RO, and she would take note. Not until week 7, I believe, after much complaints to my Uro (who thought something terrible was happening), my Uro called the RO, and asked her "What are you doing to my patient? He's complaining about a lot of burning pain from the radiation". It was only then, that she admitted to the Uro, that perhaps there was some scattering going on. But she never stopped the treatments, or dug into why I was being burne.
In hind sight (and I am not responsible for what happened to me), I should have made her stop the treatments after perhaps the 2nd time I got burned. I knew something was wrong. Perhaps having the catheter in place was making some kind of "microwave efffect" - you know, heating up the tube inside me (just guessing), or in the back of mind, knowing that I was getting a strong jolt of radiation (70.2 gys total) on a completely dry bladder.
The doctor should have stopped the treatments to investigate, instead of pushing off my complaints. There shouldn't be any pain during radiation, and if there is, why? I took the pain and discomfort, because I was being complaint in this doctor-patient relationship. Plus, I knew you couldn't abort the radiation mid-stream, and be able to resume it safely later (so I was told).
I still feel radiation is a very good tool in fighting cancer. I am not against it. But all 3 radiation doctors I talked to this time around, really downplayed the dangers and side effect potential. And the RO I had back in 2000, with the neck and throat, never even discussed the danger I was facing while undergoing a large amount of "old school" pre-IMRT radiation. I was clueless of what I was about to undertake.
When this RO told me not to worry about it (the lack of a full bladder), I should have trust my gut feeling and walked away, until she could convince me that I would be safe, that is the biggest mistake I made, but again, I wasn't the doctor here.
Age: 59, 56 dx, PSA: 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/10 .04, 8/10 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0, 4/12 37.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities