Radiation side effects.

[jraiv1963]

Radiation side effects to urethra and bladder not emptying, frequency, burning pain and strain to void, been over 18 months since treatment, PSA has gone from 12 to .27. Taking 1 5mg Finasteride and 1 0.4 Tamsulosin in mornings, 1 more Tamsulosin in evening. No serious problems with ED, just different, hard to get good long sleep, tired quite often. My diet is changed, but hard to see difference. Dr. has talked about Axonics? Just can't understand what else to do.

[Tall_Allen]

I took both Flomax at the same time before sleep. Then I switched to Rapaflo which worked better.

An RO I know prescribes two courses of Medrol dose packs.

[jraiv1963 in reply to Tall_Allen]

Did you feel as if you had urethra strictures damage?

[Tall_Allen in reply to jraiv1963]

Urinary retention: frequency, urgency, starting and stopping, weak stream

[Ahk1 in reply to Tall_Allen]

I have the same symptoms. I learned how to live with it and it doesn’t bother me much. I have a question, should I look for treatments for these symptoms or ignore it? I meant, is there any future damage if I ignore it? Thanks

[Tall_Allen in reply to Ahk1]

If it doesn't bother you much, you may want to leave it alone. You don't want to risk incontinence on top of it.

[Huzzah1]

I am dealing with the same issues. I am 30 treatments into 44 IMRT. I have been splitting the Flomax dose AM and PM. I had an appointment with my Uro and he added 200mg 3/day of Phenazopyridine (prescription strength AZO). That has taken care of the burning issues. Not being able to empty is still an issue, they did an ultrascan after voiding and my bladder measured 460. This is up from 150 before IMRT started, still not good.

[Shooter1]

Mine was easier. Sitz bone. Just sun burned my we willy.

[old64horn]

I’m have the same issues, frequent urination, urgency and bladder not emptying. My doctor gave me some samples of Gemtesa to take in the evening. I’ve only taken two pills so far so I don’t know yet if it is helping

[ukulele_grandpa in reply to old64horn]

Do you catheterize regularly? I've been catheterizing for 17 years after my radical prostatectomy with scar tissue restricting the flow. About 6 times in 24 hours. Once at night. I use a #12 (white tip) from Rusch.

[jraiv1963 in reply to ukulele_grandpa]

I used catheters for first 9 months, not again if I can pee on my own. It varies with inconsistent results, I try to change diet and drink mostly water, no alcohol, no citrus juices, limit sugar, eat right veggies/fruits, whole grains, etc...lots of chicken, turkey, fish/seafood. I wish there was a nutritional way for more relief. I think the drugs help, but once again I hurt when I pee, frequency varies, sleep is inconsistent, accidents can happen, thankful for girlfriends support and sex is still there. Strange side effects from fucked up cancer treatment.

[spencoid2]

All the same issues frequency retention etc. Seem to have radiation scaring at bladder neck but it has been such a mess that Uro can not tell for sure. CT scan showed cystitis but did not specify where. Living in the middle of nowhere with the only decent ER about 4 hours away had me concerned that i might have kidney damage before being treated. So I bought a bladder scanner used on Ebay for maybe $500 which gave me great peace of mind. Now I have a pretty good idea how full my bladder is b palpating. Also quite good at getting catheters in when they do go which is always now.

[Shorter]

At 29 months post radiation it takes me a lot longer to empty my bladder. It seems as if the muscles required may have a bad sunburn. My urethra was definitely affected, but I don't feel especially restricted. Just can't "push" anymore. I have to let gravity do it for me. And of course depends and absorbent pad under sheet at night.

[Metalworker in reply to Shorter]

I had similar problems with restriction during 44 radiation treatments. Also some incontinence issues. Fortunately our outpatient Rehabilation center had a physical therapist who specialized in pelvic floor muscles. The therapist used specialized detection software and hardware that can measure muscle condition. I did reverse kegeles to start the therapy and then switched to doing regular 10 second exert, then 10 second rest, for 10 minutes. Do 3 sets various times/day totaling 90 per day. Also do 2sec. short burst exert, and 2 sec. rest for 2 minutes. I do 3 sets of those also every day. Result: I have no more incontinence issues. Really need to stay committed to doing them every day. Hope you have someone in your area with those qualifications and equipment.

[jraiv1963 in reply to Metalworker]

I will look more into that, physical therapy was not mentioned from my urologist, frustrating to not have better options or information given from medical team. I have gotten quite tired and overwhelmed, self diagnosing or researching my situation. I've done kegels, just not to the commitment or specialized therapy you received. I got some relief with hyperbaric oxygen treatments- 20, 1:45hr treatments, its been a tiresome and expensive journey.

[Metalworker in reply to jraiv1963]

My Dr. and Urologist and Radiation Oncologist didn't know about the specialized treatment either and it was available locally. Got it with a referral from my doc. To give you and idea of my condition the ideal rating with the therapy equipment software was 7 using their scale. I started with recording 76. When I finished at 5 weeks of therapy I was recording 1 to 0.5 on their scale of measurement.

[Hidden]

It was accounts like this that scared me away from radiation. I chose HIFU instead. No regrets, no problems at all.

[Seasid in reply to Hidden]

Why is Hifu better than radiation?

[Hidden in reply to Seasid]

IMHO HIFU (high intensity focused ultrasound) is better than radiation in terms of side effects. It is precisely focused, with position and temperature feedback, to thermally zap one tiny bit of prostate tissue at a time. No ionizing radiation. No damage to non-prostate tissue. In two weeks I will be 6 years post HIFU surgery. No incontinence, no ED. HIFU does have limitations. If the prostate is larger than 45 cc (as I recall hearing the surgeon say) then the HIFU equipment can't focus that far to reach where it needs to go.

[jraiv1963 in reply to Hidden]

My prostate was larger, glad you are experiencing something different for now.

[Seasid in reply to Hidden]

Can I have Hifu if my cancer is locally advanced (going outside the prostate? Not fully inside the prostate)

[Hidden in reply to Seasid]

You'd have to talk to a urologist who performs HIFU operations but I don't think it is intended for your situation. Wouldn't hurt to ask about it.

[jraiv1963 in reply to Hidden]

Your cancer was probably low grade? PSA? Gleason? Check back with us in future with later results.

[Hidden in reply to jraiv1963]

I was Gleason 8 at time of diagnosis with a PSA of 2.7. I did receive a six month eligard shot one month prior to the surgery; ADT was in anticipation of radiation treatment but I changed my mind. My PSA was undetectable after the surgery and after the ADT wore off. My PSA is now 1.8 and seems to have stabilized after a very slow growth. I did have TURP surgery 10 years prior to HIFU. TURP is considered a prerequisite for the full gland HIFU ablation I received. My bone and CT scans were clear at time of diagnosis. I had CT, bone and Axumin scans in December of 2021. All were clear. I also take metformin and various supplements that research has suggested to have anti-cancer properties. Yep, I'm a real rebel.