Questions regarding Radiation treatment after ADT & Prostatectomy

Posted by benice268 @benice268, Sep 7, 2023

A 64 old with GS 4+3 T3B with a positive margin. Overall healthy. Urologist said it's high risk & aggressive. Had prostatectomy surgery in April but was told cancer escaped to seminal vesicle. PSA rose from 0.047 in June to 0.067 in July. Oncology suggests ADT & Radiation treatment. Radiation will target the pelvic bed. Just finished Bicalutamide for 30 days and had 6-month ADT hormone shot on Aug 18. PSA was 0.0042 (on Aug 16) after Bicalutamide but before ADT. It went down to 0.023 after ADT. It's been 5 months after surgery. Still have urinary incontinence with 1 pad a day.

Just worry UI will get worse after radiation. Before making a decision on when to start 20 rounds radiation over 4 weeks, have some questions and hopefully someone can help:
- Anyone experience light headache in the middle of the night after ADT? Headache usually goes away in 5-10 minutes. However, this interrupts the sleep.
- How long usually wait after ADT to do radiation? Rad Onc suggested early Oct.
- How to tell if urinary incontinence not getting better (- I know it is a silly question)? Right now, light jogging & fast walking will leak. Also if there is a urge to go & can't find a bathroom, it will leak a bit. Still need to go 1-2 times at night.
- Will radiation make urinary incontinence worse? If yes, will it recover to the state at least prior to radiation?

Thanks

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"– How to tell if urinary incontinence not getting better (- I know it is a silly question)? Right now, light jogging & fast walking will leak. Also if there is a urge to go & can't find a bathroom, it will leak a bit. Still need to go 1-2 times at night."

This was my progression and I kept getting better. It certainly gets frustrating but I think you still likely have more healing to do. I seemed to improve quickly until I started working out then would like a little on the hard benches. I also couldn't run for about 6 mos without leaking. at about 2 years post surgery and 13 mos post salvage radiation, I'm running again with no issues. Kegels, kegels, kegels....

"– Will radiation make urinary incontinence worse? "
It didn't seem to make mine any worse at all. If anything, the prep for the radiation treatment is an exercise in control all it's own. With the type I had, you had to have an empty bowel and full bladder to get the treatment.

Best of luck to you!

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On the leaking, best advice I got was to see a Physical Therapist who specializes in post-prostate treatment. Helped a lot

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Thank you both for your posts.

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I had prostatectomy in 2006 and then , in 2013, had 39 rounds of radiation to my prostate bet for a recurrence. To this day I still have leakage and urgency. My Urologist said there is a drug I could take , but has bad side effects. So he told me to tolerate my issues the best that I can.

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"Will radiation make urinary incontinence worse?"
Almost for sure after RP, that is a yes.

"If yes, will it recover to the state at least prior to radiation?"
That is less definitive but "maybe" is the best answer.

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I had RP in September 2016 with no radiation/ADT post surgery. 5 years later PSA bumped up to .4 and PSMA found 7mm nodule in left pelvic wall. At this point I had no UI or bowel issues thankfully. So my expectation heading into radiation/ADT was the same.

After 38 radiation treatments (25 to the prostate bed and 13 to the nodule) which ended on July 5, I have had minor issues. No UI, same sense of urgency which is not a problem, and slight increase in loose bowels. So far so good. The side effects I hate come from ADT......hot flashes day and night, restless leg, joint pain and stiffness, and general fatigue. My last Orgovyx pill is 9/15 and I am very hopeful my body will return to "normal" sans a prostate gland.

I believe the Kegel exercises and staying as active physically as you can really help with not only the symptoms but just as importantly the mental trauma. Hang in there and take it one day at a time!

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After a RP and two bouts of RT, I eliminated all caffeine from my diet. That change in diet has reduced both urgency and leakage issues. It was a tough adjustment, but totally worth it. No harm in trying.

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I had surgery in late 2017, then about a year later radiation & 2 years of ADT, then about another year later spot radiation and currently on ADT for another year.

I do Kegels daily, although not as disciplined as I would like. I have some leakage when I do something strenuous (i.e., some weightlifting, walking through bumpy trails, sometimes with a trimix erection, etc.). It's worse with alcohol (I believe the day of, but even the next day if I drink the night before) and when I drink a lot of liquids. For example, on a Saturday I might have two cups of coffee and then drink a large green smoothy and a large bottle of water while lifting weights. This creates a greater risk during and later when I walk the trails, etc. I think coffee and tea probably make it worse too based on what I have read about the caffeine.

I just met with a Dr. at Mayo that suggested doing Kegels by holding them as long as you can, releasing and counting to 10, and then repeat 10X, 3X per day. Just started this and hoping it will help compared to my prior Kegels (holding for 1-2 seconds, counting to 10, repeating 10X, 3X a day). If this does not help, he suggested pelvic floor exercises with possible the guidance of a PT therapist.

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Thank you for sharing your story. This support group is just what he needed. He does Kegels daily but as not disciplined as he would like (same as florida11). Besides he needs to deal with when to do radiation decision since he already took ATD almost a month ago, he just tested COVID positive yesterday. He already got four COVID vaccines but did not have the latest one for Omicron variant XBB.1.5 yet.

Now he needs to decide once he recovers from COVID, should he: 1) start the radiation first then get the COVID vaccine later; 2) get the latest COVID vaccine then radiation; 3) do both at the same time. He is kind of leaning to start the radiation first. He will ask his Rad Onc next Monday but wonder if anyone in this forum has any comments on this.

Thanks,

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@firespooks

I had prostatectomy in 2006 and then , in 2013, had 39 rounds of radiation to my prostate bet for a recurrence. To this day I still have leakage and urgency. My Urologist said there is a drug I could take , but has bad side effects. So he told me to tolerate my issues the best that I can.

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Hi, what has your PSA been since you finished radiation?

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