3 1/2 Years after Proton radiation I’m experiencing new side effects. Anyone have similar issues and if so any diagnosis or remedies?

[Tristag]

3 1/2 years post Proton Radiation I have sort of gotten used to having to get up to urinate 3 to 4 times at night, but about 2 1/2 months ago I started experiencing strong urges to urinate every 30 mins or so during the day with painful burning when urinating. Urologist has tested for bladder infection 3 times, all negative and prescribed antibiotics which have had no noticeable effect. Two CT scans have not shown any issues leaving Urologist perplexed. Has anyone else experienced similar issues after Radiation and if so found any cause or relief?

[Seasid]

I am really not a doctor.

Do you have a medical oncologist or only a urologist?

Could you contact the RO for opinion about late side effects?

My idea is to go back to the RO and he could order a PSMA PET scan to see what your cancer is doing in your prostate. Or/and ask your MO for opinion also.

Or you could for the start have an MRI of the prostate to see if there is something (maybe inflammation etc.) what would explain the situation?

Yes, it could be infection, inflammation or cancer.

The best would be if you could find good doctors.

[Tristag in reply to Seasid]

Thank you, yes do have an appointment with MO later this month and trying to get appointment with RO

[Seasid]

Just one question as it was not clear from your posts.

For how long have you been on ADT after the completion of radiation therapy?

[Tristag in reply to Seasid]

18 months Lupron

[ragnar2020]

Hello Tristag,

A few questions first that do not appear from reading your profile. Do you still have your prostate gland? Where did you receive your proton beam radiation treatment? What was treated? Did you consider the PBT the primary treatment for your prostate cancer following your initial diagnosis?

Have you consulted with the RO at the PB facility about your urinary problem or just your local urologist? It has been my experience with PB radiologists that they actively follow their patients following treatment for as minimum of five years, and I suspect that your treating RO at the facility where you were treated would welcome hearing from you about any problem that you might suspect could be caused by the PB radiation.

Hope these questions might help guide you in an informative direction to find a possible resolution.

[Tristag]

Thank you, Yes , still have prostate, and had PR in San Diego, Trying to get appointment with Dr Rossi now

[Tall_Allen]

It's called "late-term" side effects. Your symptoms sound like Grade 2, which occurs in about 13% of patients. It occurs because some urinary tissues (e.g., in the bladder or urethra) are "late responding" to radiation.

Do not take antibiotics. I found that Rapaflo worked well for me. You can try other alpha-blockers if Rapaflo does little for you. Some respond to a bladder anti-spasmotic, like Myrtibeq. If burning persists, try pyrimidine (available over the counter- it stains!). Sometimes, late-term side effects last a few months.

[Seasid in reply to Tall_Allen]

Good to know.

[Hogfish]

other reason for urgency is the muscles of the pelvic fllor. After all pathology is ruled out, get an opinion from a pelvic floor specialist therapist. They can make a difference.

[Budsk11]

Look into topic “bladder neck contracture”