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EBRT More to come?

Just got back from seeing the oncologist in Hilo today. He was not too clear on what I might expect, but there could be more effects from the EBRT that usually appear more than a year from treatment. The burned rectum & damaged anus came earlier than he normally sees. He was not clear as to what could/may/won't happen. As the testosterone returns to normal, the PSA will start to rise because of the damage (radiation) to the prostate. The hope is that PSA will remain below 1.0, so that ADT will not be necessary.
Do you have any ideas about which he is talking?
This past three weeks has been wonderful. I'm getting good un-interrupted sleep, and the UTT's may be a thing of the past. My blood pressure (not at the docs office) is the lowest I've seen in many years. Just need more mind control.
Have any of you listened to or read Jon Kabat-Zin? The BHS therapist I'm seeing suggested that I read one of his books and work on the mindfullness training to calm my mind.
Thanks again for all your support.
Joe

Re: EBRT More to come?

Joe,
I'm apparently at the same point in my treatment as you. My oncologist said to expect "effects" in the next few years. I'm fine right now, as you are, but I fear the coming year. He mentioned nerve damage, rectal issues, incontinence and possible permanent ED. Right now everything is fine except for the ED and low T. Some T must be returning because I sense more beard growth when I shave. I guess we will all have to wait to see what is in store for us.

Paul A. USA

Re: EBRT More to come?

A year and a half post EBRT/Brachy - I though I was out of the woods. Now I'm wondering. I was aware of late radiation effects but after a bout with the flu three weeks ago, I have been left with a tenderness in the general area that received the radiation.
The radiologist did not seem overly concerned during my 6 month visit earlier this week.

My initial symptoms left me with mucous being expelled with my stools but that went away after a couple months. Since the flu it seems that I'm intermittently back to that situation again. I had been very regular after the smell of coffee in the morning and when I got home after work. Now I find myself going in the middle of the night and during the work day with a greater sense of urgency than before. Also have more #1 urgency.

I'm scheduled to have a follow up colonoscopy from last year's polyp removal so I'll have to post when I get the results. Oh well, enough potty talk for now - p (Alaska, USA)

Re: Re: EBRT More to come?

Hi,
The effects of EBRT do seem to linger for some of us. No doubt in my mind that the radiation carries long term effects on the bowels for some, not all.
The mucus aspect seems to be a pointer to effects. I had months of that after treatment.
Even now, four years later, I have to clear the bowels twice before daring to leave the house in the morning. After that real urgency (!); usually fine until the next morning.

I found that the dietry angle helped a great deal. Be prepared of some intolerance to certain foods.A diary of food taken will help pinpoint the usual culprits. e.g. Too much wheat. etc.

Regards to fellow sufferers,
Rob

Re: Re: Re: EBRT More to come?

I completed EBRT this past August 7th and still going through the mucus stage, etc., but somewhere along the line I missed how this therapy had anything to do with testosterone levels being lowered or rising. I had a RP three and a half years ago and then the EBRT.
What am I missing????

Jack

Re: EBRT More to come?

Hi Jack,
One thing that Joe, Paul, and I seem to share was a course of ADT added to our treatment. This would be the cause of the low T. However I don't believe that the mucous issue is related to the ADT. Paul A was most likely making a statement on his overall progress. - p (Alaska, USA)

Re: Re: EBRT More to come?

Pat:

Thanks, now I understand.

Jack

Re: EBRT More to come?

Thanks for that Joe. I must say I was not aware that new side effects could develop so long after the completion of treatment – I don’t recall this featuring in any of the updates from “radiation” men, so I’m guessing that it may be a possibility rather than a probability.

Either way I can understand your concern, but hopefully the better path you are on now will continue to be the one you stay on!

All the best

Terry in Australia

Re: Re: EBRT More to come?

Terry,
That's good news (not many reports of long-term effects). I was bracing myself for more bad news down the line. I hope this is it.

I also had the mucous stage as well. After that, I had the "three days of diarrhea every other week" stage.

Paul A. USA

Re: EBRT More to come?

Aloha,
It has been my opinion for some time that the Prescribed Dose in EBRT has been, over the years, increasing, always just below what is thought that might damage healthy tissue. After the first half of the dose (pelvic cavity), they used ultra-sound to view the bladder & prostate, then positioned the beam accordingly. With this guidance system, bladder damage is minimized. Where before all they had was X-rays and possibly metal seeds in the prostate target area to aim the beam. I suspect that the dose may have been pushed up to the point where we are seeing very late long term effects in healthy tissue, which may not have been seen before, due to lower doses.
As for killing the cancer, what is the grow back rate now ... 35% positive in five years?
Joe

Re: Re: EBRT More to come?

I went to a prostate support group last night. the speaker was a radiation oncologist who is working on shortening the treatment time. His research shows that higher dose treatments over fewer weeks works better. Better technology (image guided, intensity modulated, hypofractionated doses) causes less of the good tissue to be affected. This allows for higher doses to the bad tissue. He feels he should be able to treat a patient in as little as one week.

Paul A, USA

Re: Re: Re: EBRT More to come?

Paul,

The most heavily touted form of hypofractionated radiation is CYBERKNIFE which is done over five days.

This is still regarded as an experimental form of treatment as there are no long term results for PCa.

All the best

Terry in Australia

Re: EBRT More to come?

thanks my brother has very bad side effects ibs radiation burn severe constipation loosing weight no energy he had ebr 4 or 5 years ago think twice about this anyone interested question what is the cure i mean what should he do his belly isa s hard a football thanks jq

Re: EBRT More to come?

Aloha jq,
I think your brother should see a doctor/oncologist as soon as possible. It sounds like there could be complications. As to a cure, I'm not cured, however I am able to lead an active life once the damaged organs were removed (+ recovery time.
Let us know how this problem is worked on/turns out,
Joe

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