New side affect from radiation

It's been my experience, having been through major bouts of radiation in the past 12 years, that RO's really understate not only the short term normally expected side effects, but more importantly, go blank when it comes to long term or delayed side effects of damage as the results of radiation treatments in general.

When it came to my surgery, all negative possibilites were pretty well spelled out by my uro/surgeon way in advanced of the surgery. Unfortunatley for me, many of them came to be. But at least I halfway knew what to expect. I don't like surprise with medical treatments or procedures.

The first time I underwent radiation in 2000, the RO at the time didn't even give me the basic expected side effects. He only explained things to me after the fact, as I reported problems to him while undergoing the treatments. In my utter ignorance at the time, I didn't know what to ask, I simply was compliant, and boy, were there a lot of unpleasnt surprses along the way. There were several times, during that 2 months, that my wife begged me to quit the treatments, as she saw first hand all the physical damage that was taking place right before her eyes. I, of course, toughed it out, as the radiation was my only hope at stopping a very rare and lethal cancer. There was no known cure, as there were so few cases in the world, and because of that, there wasn't any accepted standard of care to try. The radiation was only meant to be a shot in the dark. However, it seems to be have been effective, as the oncologist said I needed to be at least 10 years clear to begin to feel safe, its been 12 years now.

I also don't like how the RO's dump patients after RT. This seems to be the norm according to both my uro and my oncologist. They do the damage, take their money of course, and then they really don't want to deal with the patient's side effects when they start to show up.

David in S.C.

Jerry,

Hate to hear the news, but at least he was able to determine the cause of your woes. Those must be some big stones. Did he give you anything to help you with the pain while the rest of it is breaking up and passing?

Will be glad for you when the worse of this is over, there should be a huge improvement. As far as the hyperbaric treatments, from talking to my doctors and the people at my Oncology Rehab, there seems to be mixed opinions about the usefulness and effectiveness of them. They have reports of it almost being a miracle cure, to t he other end, where they fill its an utter waste of time. I have been offered it before, but still haven't been eager to sign on to it either.

Good luck to you, hopefully you will be on the mend soon.

david

 

David,

I agree lots of side effects keep poping up.  Hopefully this will work and I will not need anymore treatment.  The pain is not bad so I am not taking anything.  Today no blood or burning.

Debbie,

Mine was salvage radiation to the prostate bed while my Doc said it is common it goes not happen to everyone.  Good luck to your husband.

Jerry1 

I can only re-emphasize the fact that SE from radiation can occur well after the tx. is done.

It can be quite insidious.

I still think the RO folks soft-well this information and many don't want to deal with them when they occur.

That's been my experience and it appears to occur quite a bit.

Mel

Two yeas 2 months out of IMRT, one month ago started burning and small blood clots upon urination, thought were kidney stones and went and had a scan and no stones, sounds like radiation cystitus, start of urination is good but last few drops out burn like he$$ and the blood starts. uros all bookd up but finally got in this comming Thursday.