Connect
Salvage Radiation Therapy Experience
In two days I'll complete my program of 38 radiation treatments for recurrent prostate cancer, and wanted to post a brief update on my experience, as a reference for anyone facing a similar treatment regimen. I have no idea if my experience is typical, but thought it might be a useful anecdotal reference.
Heading into the treatment I had many fears that it might adversely affect my incontinence, bowels, sexual function, etc., but I had absolutely none of these or other side effects, aside from a bit of fatigue (I've learned to take mid-day naps for the first time in my life), and one instance of diarrhea after eating chili one day 🫣. Perhaps I've just been fortunate, but overall I've been exceedingly pleased that my experience was almost a non-event. The final determination, of course, will be whether or not the treatment has been effective in eliminating the recurrent cancer.
Based on my personal experience, my advice to anyone facing salvage radiation therapy: don't let fear of risk factors overwhelm you, as the reality might turn out to be as favorable as my own. However, as the financial industry likes to warn: individual results vary, and past history is no assurance of future results.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
My experience was the same as yours, Except I didn’t have the fatigue. I would have my radiation first thing in the morning and go to work in my computer consulting business all day. Never even was tired at night.
I did hear from a couple of people that were getting radiation at the same time that they were having fatigue when they left and had to sit in their car and wait till They felt better.
I had almost the same number of treatments you had, It seems that people that have 20 or so have more problems than those that have 38, or around that number. There’s a lower dosage of radiation each time and that seems to make a difference.
-
Like -
Helpful -
Hug
2 ReactionsDebbie Downer Alert.
I had no issues at all other than pissing myself a few times on the machine for 5 years after 39 Radiation Treatments. Now it is hell!
@briang1958
What happened to you after five years? I have had incontinent starting six years after salvage radiation. It has gotten worse over the last 6 years, to the point, I’m having an AUS installed In April. Other than that, I’ve noticed nothing related to the radiation.
My bowels are shot. No doctor has blamed the radiation, but my AI and this forum led me to believe the Radiation may have caused all this.
Heading to see surgeon now
@jeffmarc
What kind of radiation did you have? There seems to be so many! Then did I understand you right all was fine for 6 years and then the incontinent started? Woe, I would have thought it would start right away and hopefully clear up. But being okay for 6 years and then starting up must have been a surprise. I got so much to learn.
@diverjer
When you have seven or eight weeks of radiation, it’s almost always IMRT. Sometimes it’s called EBRT but it is not SBRT, which is done in about five sessions and they really have not been doing SBRT salvage radiation Other than in clinical trials.
The incontinence started six years after radiation and nine years after a prostatectomy. It’s probably the two things combined that caused the problem.
Yes, it was not just a surprise, but very annoying when I started having leakage and needed to put in a thin pad. Now, if I’m really active, I can fill a thick pad in two hours
-
Like -
Helpful -
Hug
2 Reactions@briang1958
I wish I could say I hadn’t heard this before, but when I brought side effects up at one of the ancan.org Weekly advanced prostate cancer meetings a number of people piped up about the serious problems they had after the radiation.
Here’s some of the information I’ve heard
Adjunct and salvage radiation possible side effects
Radiation proctitis
Rectal issues
Rectal bleeding
Bladder infection
Breaks in bones radiation damage to bones
Fibroses in bladder which can reduce capacity
In general, toxicities after postprostatectomy radiation using photon-based techniques have been tolerable, although the rates of late grade 2 and gastrointestinal (GI) and genitourinary (GU) toxicities range from 10% to 20% with image-guided intensity-modulated radiation therapy (IMRT).
What this means. “ late grade 2 and gastrointestinal (GI) and genitourinary (GU) toxicities”
Above describes moderate symptoms of damage to the bowel and bladder, requiring minimal intervention but impacting daily activities, and occurring after salvage radiotherapy for a recurrence or persistent cancer after initial treatment. Gastrointestinal (GI) symptoms can include moderate diarrhea or bleeding, while genitourinary (GU) symptoms might involve increased urinary frequency, pain, or intermittent bleeding.
A link to article
https://pmc.ncbi.nlm.nih.gov/articles/PMC8019576/
-
Like -
Helpful -
Hug
1 Reaction@jeffmarc yup - this really suck
@diverjer - Mine was 39 EBRT treatments - then 5 years later metastasis and leakage
-
Like -
Helpful -
Hug
3 ReactionsFrom what I find searching around it seems like SBRT would be about the same with only 5 treatments?? Is there some reason to avoid SBRT, looks like it's been around for a decade or more. Also, looks like it more accurate, less damage to surround tissue. Then there is something I read about a proton beam that is even suppose to do less damage?
Does everyone get this chemical re-occurrence after prostate removal. Sounds like I am in for a long haul and lots of learning. I thought a person could get it removed and in a few month be over wetting yourself and back to having sex. No problems years later.
-
Like -
Helpful -
Hug
3 Reactions