Radiation LT Side Effects

I wonder where they get those numbers?

Just remember that a lot of guys who never have problems, never post here and just move on. Often we hear more bad stories because the guys who have problems tend to stick around longer. We get a bit of a biased view to the bad view of the world. So I don't think you can compare the stats you seem to see here vs. what the ROs said.

Not to say you won't get SEs, but we do hear more bad than most mortals.

My RT left me with urgency, radiation proctitis, need to use mirlax a lot, easy to get rectal bleeding, and I tend to glow in the dark.

Andrew

In that case, ask for the gamma radiation machine and not the x-ray type...

and get some green paint, lots of green ...

I just finished the first part of hdr brachy boost - 15 fractions of IGRT. Definitely having ST effects, burning and difficulty in urination (flowmax was a real relief), and now fatigue. After the HDR I'm hopeful that things return to normal in good time. Knock wood. Followed your story with interest. Good luck.

Pratoman said...
In JohnTx thread, he talked about blood in urine, i didnt want to hijack his thread, but it made me think

My RO, Zelefsky, at MSKCC, told me 1% chance of long term side effects
Another top RO, at Cleveland Clinic Florida, told me 5%.
These are top guys, that have no reason to exaggerate or embellish. I believe them. Yet i see posts like John, pissing blood, and BobbyMac, same thing, and others who have blockages a year, two, three after SRT, and i dont understand. Conflicting evidence. Seems like more than 5% here have longer term issues as a result of SRT

I hear you. One reason why I chose surgery over radiation was reading about long term side effects of radiation but like Andrew mentioned, all of our sharing experiences here are just anecdotal evidence.

Prato,

Relax, I had 85 GYs IGRT and have had no problems whatsoever. I think you will be fine. They can shoot a lot straighter now with the newer machines than they used to. It been over two years ago for my treatment.

Carl

Stan1961 said...


Really and you told me to chill .....how do you handle all this ....do u still have all these problems ...rectal bleeding. Ptoctitus ...glow in the dark ....really ...

With grace, mindfulness, faith, stubbornness, and the sure knowledge that I got off lightly.

and I focusing living the best I can with what I have left. I don't spend a lot of time counting the cost.

Andrew

Longer term, I don't pee as well as I used...maybe 70% as efficient. I take a Rapaflo every 4-5 days, which brings it back to 100% and then when I start to notice the flow is down I take another one. I did go a year or more without taking Rapaflo just to see how it was. And it was quite manageable with our medication, but on balance I decided I'd rather take take the Rapaflo.

One other thing to note, which really isn't much of an SE. When I have the urge to pee it seems to be more intense. Not any sort of big deal at all...just different. But I don't think I've ever heard anyone else say that.

No idea if any of this is relevant to SRT.

Stan1961 said...
Seriously about the glowing what does that mean I hope I dint hsve proctitus the bleeding did stop .i had the x ray type...you have helped me but I didn’t realize u had all,these problems figured u were here for a reason could you please tell me the symptoms of proctitus thanks

All beam radiation is given as x-rays. HDR brachy radiation is from a particle source.

Radiation proctitis normally takes awhile (months, years) to have any symptoms. It's an inflammation of the colon that can cause mucus discharge, pain during bowel movements, feeling like you need to go all the time, and bleeding.

At one point I had a laser treatment to burn away some of the damaged tissue. I've learned to self manage the problem by making sure I don't get constipation, drink plenty of water, and walk. I do have to take daily doses of miralax and sometimes have to use a suppository to manage really bad days.

You just learn to adjust your life to minimize the effects. I don't dwell on them much - just take care of business and keep moving down the highway.

Andrew

Pratoman said...
St side effects are expected, I’m concerned about more lasting se’s

Aren't we all.

Bowel issues, urgency, strictures, and bleeding are the more common long term effects I hear of.

The radiation proctitis has been the bane of my life since I finished RT.

SRT is slight worse as you have no prostate to absorb radiation as it goes flying through your body.

But in the short term, you'll more problems with HT that SRT. Once you get a couple of years down the road a little problem peeing and pooping is going to see like nothing compared to HT.

You have that joyful thing to look forward to.

Hang in there, you'll make through with minimal damage.
Andrew

Stan, yes it was a joke. 🙄🙄🙄

Andrew, so what I can’t reconcile is being told 1% chance of any of this stuff happening down the road

Prat - neither can I. 1% seems low, 10 - 20 % I'd believe (but have no proof for that statement). I think the number is higher, but there is a chance you'll avoid problems. Still, even if you end up with something, I'll bet it will be manageable. Personally I know the location of every men's room in my city...

Stan - glowing is a joke (more of a wish, I'd like to be my own nightlight). Yes, sometimes I have bowel movements like before, but sometimes things go bad and I have to deal with it. I have to be careful and eat tons of veggies, drink lots of water, walk, and things are fine. If I miss any of the self care steps - I'm dealing with pain. You just have to learn where your body is, how to manage that, and just deal with it.

The alternatives aren't what you want.
Andrew

Well maybe I will get lucky I just eat everything I hsve been eating and I am ok now the bleeding has stopped...question ..do u yhink in a month or so I should have my digestive guy take a peek to see all is good