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Has anyone chosen SBRT despite preexisting urethritis?

SongofFred profile image
18 Replies

Hello everyone, Thank you all for participating here The information so far has been invaluable.

[I’m 58 and was diagnosed 5 weeks ago with Gleason 4+3, (9 of 16 cores positive, only two had 4+3. A few 3+4’s and the rest were either 3+3 or negative). Perineural invasion on both sides. Decipher score .88 (ugh) showing Luminal B cells. No spread shown on MRI].

I believe I have stress-induced prostate and urethral irritation similar to prostate symptoms.

The past few months have been extremely stressful and the symptoms have been elevated though some days nonexistent, some days mild or moderate.

My symptoms are general urethral and prostate discomfort. Not Pain.

It can be aggravated by ejaculation and can remain elevated for days afterward, but then again, sometimes symptom-free ejaculation.

Over the years during periods of flare up I’ve had cystoscopies, blood and urine tests, all negative for obstruction or infection. (Latest tests were April this year).

Urine flow is normal, urgency may be slightly increased during height of symptoms, but only slightly.

What I need to know is if the urethral/prostate irritation is stress-induced and here’s why:

I soon need to make a choice between SBRT, Brachytherapy, or surgery for aggressive PCa.

As we know, high dose radiation can aggravate urinary irritation and is not recommended specifically for individuals with urinary blockage, urinary frequency, or urgency as it may permanently aggravate these symptoms.

What is not known to me is if I am at risk of permanent symptom aggravation if it only appears at times of high stress like the last few months.

I am aware that alpha blocker, Flomax, can alleviate the symptoms. But if I was to try that temporarily and it worked, i’m not sure if it would answer the question of whether my symptoms were brought on by stress, alone, or if there is an inherent genomic makeup of my urethral cells or nerves that caused the symptoms because Flomax would work either way.

What I think would be a stronger indicator of stress induced urinary irritation would be to medically reduce my stress level, (since I am not able to reduce it otherwise at this moment)

I’m proposing to my primary Dr that I have a short course of Xanax (or similar drug).

Xanax is not a treatment specifically for urethritis so if my symptoms abate while on it, it will show that my urethritis is stress related.

Then the big question: If it’s only stress related, would radiation aggravate urethritis if no stress is present?

At this time I’m leaning toward 5 MRIdian treatments at UCLA with Dr. Kishan, and 12 mo. Lupron.

He had a little pause when hearing about my stress induced urethral discomfort and left the decision to me.

He is sending me the cheek swab test for the genomic predictor of urethral sensitivity to high dose radiation so that might help a bit.

But I need more information!

Have any of you had to gamble with occasional mild urethral discomfort and chose SBRT anyway?

How are you now?

Did anyone acquire grade 3 urinary toxicity? Did you have symptoms before treatment?

Any thoughts would be very much appreciated. Thank you.

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SongofFred
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18 Replies
Tall_Allen profile image
Tall_Allen

Brachy usually has high urethral dose, so you might want to eliminate that option.

Assuming the cheek swab is OK, he doesn't have to treat you in 5 treatments, he can spread it out to about 20 fractions (4 weeks of daily).

Do bladder anti-spasmotics help? Myrtribiq has fewer side effects than most. Or if alpha-blockers work - just take it starting Day 1.

SongofFred profile image
SongofFred in reply to Tall_Allen

Is there a way to determine how much efficacy is lost in 20 doses vs. 5?

I haven’t tried any meds yet as I’m trying to determine if it’s stress induced and therefore maybe more controllable. Will start Flomax at treatment time.

Thank you for your response!

Tall_Allen profile image
Tall_Allen in reply to SongofFred

No efficacy lost - he gives the same biologically effective dose.

What's the difference what the cause is, if the medication works?

SongofFred profile image
SongofFred in reply to Tall_Allen

My reasoning is if I test an alpha blocker or Myrbetriq before treatment and it works on current symptoms, it doesn’t necessarily mean it will work on the same symptoms permanently aggravated by radiation necessarily.

If I test Xanax beforehand, since it is a treatment for stress, not urethritis, and it works, it shows that my symptoms are due to systemic stress which I should be able to manage by yoga, lifestyle change, diet, or medication. At that point I would also have the benefit of combating the symptoms with both stress reduction meds and urethral/prostate relaxers if necessary.

Of course no guarantees, but I’m trying to make as smart a choice as possible with a few intangibles.

Tall_Allen profile image
Tall_Allen in reply to SongofFred

Those are prescribed for post-radiation as well. The irritative symptoms are almost always temporary, not permanent.

Cdubu profile image
Cdubu

I had decades of moderately poor urinary function and was deathly afraid of a stricture so I had a cystoscopy which ruled out any scaring or anatomical problems. My cheek swab came back as moderate low risk so I proceeded with the MRI guided 5 sessions radiation at MSKCC.

I'm happy with the results. Initially I needed about 10 days of Advil to reduce the inflammation but there were no serious side effects. At 5 months out my urinary function is about as it was though I do take 1 flowmax daily. At 6 months I plan to see if I can stop the flowmax.

Best of luck to you

SongofFred profile image
SongofFred in reply to Cdubu

Well that’s great to hear. So did you have any urethral discomfort as well prior to radiation, or just low flow?

Cdubu profile image
Cdubu

just chronic low flow

maley2711 profile image
maley2711

You are only going to receive anecdotal replies here,,,IMO not the basis for decisions? On other hand, probably nor real studies re your question

SongofFred profile image
SongofFred in reply to maley2711

True.

Cmdrdata profile image
Cmdrdata

I was one of the Phase 2 trial patient in early 2007 at UTSW. Five sessions at 9 Gy each. Biopsy was G4+3. Burning sensation during initial pee flow only but no problem after a few months. Semen dried up within a year. Had minor blood in stool 2 years later. Anal tract bleeding was cured by Argon plasma coagulation. Fine now since then side effects wise. When the trials were concluded and approved, as TA mentioned , it is as good as IMRT

SongofFred profile image
SongofFred in reply to Cmdrdata

Wow, so glad we live in an age where they can cure it. Thank you for sharing.

jjpeabody profile image
jjpeabody

If you're seeing Dr Kishan at UCLA and having the swab test you're already doing the best planning you can do in MHO. Kishan is a top and passionate person (straight A`s at MIT and Harvard parallel his ethical values and excellence). If do not pass swab test just be sure to go to a center of excellence for your treatment/procedures if you can. Good luck

I did not have significantly preexisting urinary complications, but took cialys for 30 days before and 90 days after 5 dose SBRT for 3+4 favorable intermediate PC. It was to reduce frequently of nighttime peeing and maintain erectile function. It seemed to work. Four years after treatment, I continue to take lowest dose cialys for same purposes and it continues to work well for me.

WilsonPickett profile image
WilsonPickett

I’ve had prostatitis for 40 years on and off, probably a fair amount of it stress related, as stress can aggravate almost anything, but mine occurred from an initial infection, and just decided to hang around the rest of my life.

The SBRT I had at Sloan Kettering Prostate Center, didn’t make it worse, but surely didn’t help. 18 months after treatment I’m down to only having occasional symptoms, but it was a long slog of discomfort, but rarely pain. I still take Alfuzosin 10 mg, Three times a week, down from daily to help with flow or discomfort. I had Gleason 3+4. My decipher was about 68. SBRT in retrospect was the best choice for me. So far so good.

Good luck to you. Don’t hesitate to reach out if you have more questions.

2.01 ng/mL. June 10 2022

SongofFred profile image
SongofFred in reply to WilsonPickett

So it sounds like you resolved back to your personal baseline. That is informative. Glad it wasn’t permanently aggrevated. Thanks for your reply.

WilsonPickett profile image
WilsonPickett in reply to SongofFred

I would say that’ correct. Except I have no chance of a career in porn. Erections are good for my age but no more ejaculate.

Mike404 profile image
Mike404

I had low flow and slow start for years. I had to have my urethra opened after a surgery, and this was attributed to scarring from a prior infection. I started on Flowmax, which helped, but eventually discontinued.

I took the genetic test from Kishan and was low risk. I started Flomax immediately. I found it improved my stream. There was a decline after SBRT, probably back to my baseline. Biggest issue was nocturia. I was getting up a few times per night. The bladder would burn a bit when full.

After eight months, everything seems to be resolved. Best stream I’ve had since being a kid. Still on Flomax, but plan to start tapering off.

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