Members Comments Also Needed: How did Salavage Radiation (SRT) or Adjunct Radiation affect you?

I am newly registered to HW forums. I see no one has posted to this thread for over 3 years. I'm about to start adjuvant RT (66 Gy) and ADT (casodex + lupron) and I'm worried about side effects. I am in very good health other than PC but am pre-diabetic and have osteoporosis and lymphedema. I'm 74. Anyone out there who can share info on what to expect, esp. incontinence and bowel issues? ED has been issue since surgery but not total. I assume it will get worse. I've found nothing online about what the likelihood of different side effects are. thanks.

Steve1911,

I started a new thread for you. you'll get a better response there than on this old thread.

I haven't been on HT, but RT side effects normally aren't that bad. Some guys report bowel troubles and fatigue, but most don't notice much. In the long term RT will have a negative effect on ED.

But the HT will kill your libido so you won't notice for awhile.

Hang in there, lot of folks here have been through it and will be along to share their experience.
Andrew

Forgot to add my stats:

Robotic RP 11/23/10
prostate was measured at 45 g.
Final Gleason score was 3+4=7.
15% of the right lobe was involved and 45% of the left lobe with perineural invasion
Tumor was invading the right seminal vesicle. Cancer cells grew directly along the ejaculatory duct into the SV which is the most common form.
5 lymph nodes were removed and had no cancer
Stage pT3b, N0, Mx
Psa <.01 until .03 (6/14), .12 (11/14) .18 (09/15), .26 (04/16), .33 (09/16) with ups and downs during the 2 years

TrailGuy: Thanks so much for your brutally honest reporting. Enormously helpful.

I hesitate to even comment as my SRT just started last week. I've only had three treatments but I could swear I feel a burning sensation in my gut/bladder/whatever. I've had some issues getting the bladder full enough and using a dick clip to hold it in but it hasn't gone very smoothly so far. Plus they keep changing my table times so it's hard to get in a rhythm. 35 sessions to go so who knows how it will end up. This is a rough thread for many and my heart goes out to all who have endured so much. One day at a time right now. All one can do is remain hopeful. I think Purgatory hit the nail on the head with acceptance. It's really all one can do and continue to move forward without letting this experience make you crazy.

Thanks, Steve. Yes, you need your bladder full for radiation treatment. If it isn't full enough, it can damage your bladder. See Purgatory's story in this thread. You also need your bowels/rectum as empty as possible. Otherwise radiating the rectum can cause other SEs. The dick clip was provided by my radiation tech. It helps hold it in if you have difficulties as I do. The bone scan is to rule out metastestis. I have a questionable a spot that showed up on an ultrasensitive PET bone scan. They really don't want to radiate if there are bone mets because it isn't curable. The point of SRT s to cure. The combination of CT and MRI is to program the machine so IMRT will hit the spots it needs to and spare the parts you don't wan radiated. It was the MRI that showed my bladder nodule. As far as your stats, there's a box to click that will show your stats assuming you've completed that in your profile. Hope that helps and best of luck to you.

I just happened to see my old thread here brought to life.

For those that have any report of a burning feeling when being radiated. Make sure your RO knows immediately. Can't stress that enough.

My story is well known and told at the start of this thread. I am living the life of being fully disabled and in severe chronic pain almost 7 years post radiation.

My RO laughed it off as my imagination. It most certainly was not. I could plainly feel the burn, and she refused to halt the treatments, not even to investigate the burnings. Like a dummy, I consented to continue day after day, as the burning became worse and worse.

The damage that was done to me is forever with no hopes of improvement. I should have stood up stronger against the doctor at the time, but thought I needed to be compliant, and more importantly, I trusted the doctor because she was a doctor, and I was the patient.

If I could only go back in time and re-claim my life and broken body, but that is not reality. I will live with this suffering the rest of my life. Even with a non-connected bladder, I still have intense strong bladder spasms every single day, even this many years out. And now the RT damage is spreading further, through my small bowels, my rectal wall, and even deep in my groin.

If there is any sensation (genuine) of a burn, by all means, insist on a proper investigation before proceeding. You don't want to end up like me.

I second Steve's sympathies, Purgatory. I will be meeting with my RO this afternoon and will be sure to mention the burning sensation. I have no idea whether that is normal as Dr Who mentioned the same thing above and I'm just completing my first week of SRT. Since I didn't graduate from medical school, I'm afraid I would assume the same as you did and make the same choice to move forward with treatment. Would the alternative be not to treat and thus give up hope of a cure? I'm doing my best to be compliant with a full bladder for each tx. It does boil down to trusting the treatment team, hoping they have our best interests at heart, and hoping for a positive outcome. I may be too trusting but I'll certainly have the discussion with the RO.

During the end of my rad sessions I had a mole get all dry and cracked, it sloughed off a few times then disappeared.

Post rad, my incontinence got worse.

Thanks for the encouraging report, Mag. Great to hear you had such a successful outcome. May we all be so blessed.

rcroller, can only speak of my own case.

burning began on session 4 of 39. was told it couldn't happen. then was told I had an active imagination. then I was told to trust them.

burning progressively worsened from 5 through 39. imagine having a bad sunburn, then being forced to sit in the sun for another 35 days.

I didn't trust my gut on this deal, as I had problems with my first major radiation event in year 2000 in my neck and throat. I was already very radiation sensitive, and very sun sensitive, not a good combination I learned later. As far as my empty bladder each time due to having a Suprapubic catheter in place, my RO insisted that "she had compensated for that, not to worry about it." Famous words.

There were many days after the burning began, that I had to be assisted even sitting up on the table after the zap, and had to be helped to my feet. It was always a long painful walk back to my car.

It would have been so simple to have a full bladder in my case. Choice one, was to simply clamp off the catheter exit tube, and have me drink the required water like any other guy. Choice two, they could have injected water via the other tube on the "Y" end of the catheter, where they irrigate the catheter if needed. Either way would have been so easy and quick.

All I can say, is good luck ahead.

I fault a very frustrating nearly 3 year malpractice battle with zero results, even though I found out later, my RO had lost several cases in the past. Here in SC, years ago, they passed this tort reform law on malpractice, that makes it all but impossible for a patient to win, unless they die. Went through multiple law firms, and finally was defending myself, but a 3 year statute of limitation ran out before I was able to complete litigation.

Every time I feel the hole in my side for my Urostomy, every time I get a bladder spasm, every time I endure the relentless burning sensation and pain from the hips down - I am reminded that I allowed this to happen to me. Worse part, was that the radiation didn't remotely slow down the cancer. Had I been cured, perhaps I might have said it was worth it. I was only given odds of about 20% of it working at the time.