Diagnosed with prostate cancer, where to go now in this moment?

@tbgb50 I had 28 IMRT sessions with gold seeds that were supposedly making the radiation more precise in it's delivery to the prostate. I had HORRIBLE side effects but nothing like you. You had issues for 10 years so this just made it worse. You might consider something like this so you can get some sleep. When a patient experiences side effects this severe, oncology teams typically intervene medically rather than stopping the curative cancer treatment:
• For the Bladder: Short-term use of alpha-blockers (like tamsulosin/Flomax) to relax the prostate, or anti-spasmodics (like oxybutynin) to calm the 24-hour urgency. In cases of near-total urinary retention, a temporary catheter may be placed to allow the bladder to rest and the patient to sleep.
• For the Bowels: Aggressive hydration, strict low-residue diets, and prescription anti-diarrheal medications to prevent dangerous dehydration and electrolyte loss.
It is a stark reminder that while radiation is often marketed as a "gentle" or "convenient" alternative to major surgery, the microscopic tissue inflammation it leaves behind can be profoundly disruptive to daily life.

I just finished 28 radiation treatments at Mayo in Jacksonville Florida. Fifty percent of the men in my group had already had surgery and were now back for salvage radiation. All it takes is for the surgeon miss one microscope cell and the whole thing starts over again.

@suzdog
Thanks for the advice. I have been taking Flomax for 5 years and the best I could do it getting up 3-4 time per night. After the second week of treatments, the RO had me double up on the Flomax. Unfortunately it did not help.

What did help is a Medrol Dosepack. You start with 6 pills on day one (different times of the day) and reduce it by 1 pill per day. This helped curb the constant feeling of having to urinate; often a phantom urge.

Hopefully not jinxing anything but I got a decent night's sleep of the last two days. Still need to get back to a normal schedule - going to bed too early so I'm getting up between 1:00AM and 2:00AM.

I'm hoping this means the side effects are winding down faster than I was advised (told it would take 2 weeks to notice improvement but today makes 6 days).

Truer words have never been spoken:
"It is a stark reminder that while radiation is often marketed as a "gentle" or "convenient" alternative to major surgery, the microscopic tissue inflammation it leaves behind can be profoundly disruptive to daily life."

The reality is you can research all you want but won't know what, if anything, will be challenging until you start.

Glad to hear you're doing better. My RO handed me a 3 page print out with one section of .."this might happen to you after radiation treatment". NOTHING it said was even close. I tracked my bathroom visits - 12 total average a day-#2 with the visit 3-5 times a day with no warning-Have to sit all the time now/never know what's coming out. Massive stomach issues. CT Scan/colonoscopy/esophagogastroduodenoscopy (EGD)/ultrasound of liver, kidneys, gallbladder, pancreas, spleen, and abdominal aorta. All negative except CT scan shows my bladder is f'ed up & permanent damage from radiation. Did stomach issues go away ? Nope - almost 2 years later stomach gurgles all morning/gas at night/pain sometimes. Doctors can't find anything so they think I'm nuts. I itch all over. The new RO I saw says no way it's related. So I just started itching all over after treatment but not involved ? Again, all kinds of pills prescribed/dermatologist has nothing to diagnose/no rashes/skin conditions. Yup, this radiation stuff will change your life for sure. But, like my one Doctor used to say, Well, is the cancer gone ? There's that. Yay.

@mjm8491 This is true, about a third of all surgery patients need salvage radiation.

@suzdog Search ‘radiation dermatitis’…very common.
Don’t know about itching all over, but definitely could occur on the abdomen, sides and back with prostate therapy. That’s ‘all over’ in my world!
The remedies are mostly the same as for severe dry skin or there are even some meds which may help…Best,
Phil

@suzdog Your post is odd to me. Gold seeds are used in brachytherapy, not IMRT. IMRT is a low dose treatment having wideband precision compared to SBRT which delivers the same radiation in 5 fraction as it is more precise.

@ctsenior Your post is incorrect. Gold seeds are absolutely used with IMRT.
1. Gold Seeds vs. Radioactive Seeds
In brachytherapy, the "seeds" are actually radioactive pellets (typically Iodine-125 or Palladium-103) that are left permanently in the prostate to kill the cancer. My post was completely accurate to my treatment: I received non-radioactive gold seeds alongside my IMRT radiation.
In external beam treatments like IMRT (Intensity-Modulated Radiation Therapy) and SBRT (Stereotactic Body Radiation Therapy), doctors frequently implant 3 to 4 tiny, non-radioactive gold fiducial markers (often called gold seeds) into the prostate before treatment begins. Because the prostate shifts slightly depending on how full the bladder or rectum is, these gold markers act as precise "bullseyes" on daily X-rays. This ensures the IMRT or SBRT machine targets the prostate exactly and avoids surrounding healthy tissue. 2. IMRT Dosage and Precision
IMRT is not a "low dose" treatment, nor is "wideband precision" a medical term. IMRT delivers a highly effective, full curative dose of radiation. However, it splits that total dose into many small, daily fractions (usually 20 to 45 sessions over several weeks). This slower timeline gives healthy tissues time to heal between treatments. Like I originally posted, I had exactly 28 sessions of IMRT with gold seeds inserted.
3. SBRT Delivery
Your point about SBRT is accurate. SBRT is an ultra-precise form of external radiation. Because the tracking is so tight, doctors can deliver highly concentrated, "ablative" doses safely. Instead of taking several weeks like IMRT, SBRT condenses the entire course into just 5 treatment fractions over a week or two.
I hope this clears up your misconceptions about gold fiducial seeds, radioactive seeds, and how these treatment types work.

@suzdog
Are you on any of the drugs many of us are on for prostate cancer? Either ADT or an ARPI. Some of those drugs cause itching. I have spots that itch, Lower middle of my back, Right at my hips. I do have some medicine I put on those spots every day and it does stop the itching completely. If you just have some spots that itch, I can supply you the information about getting that Prescription salve.

@jeffmarc Thanks for the offer of assistance but the itch doesn't lend itself to localized treatment. In answer to your question No, I opted for the radiation only. No hormones/No drugs. Almost 2 years out my PSA is .83 so things seem to be great with the cancer being zapped. As far as the itching, it's mainly upper body so ALL the doctors I go to say it's not related. It's not in any one place so no way to treat something targeted. I am taking Cetirizine now & it seems to be helping in that the itching is not as bad or maybe it's all in my head that it's better as it's still there - Everyday. I did find this little ditty in interrogating AI. Only thing that makes sense for my situation. Here is the explanation just for general information. When you received your prostate radiation treatments, the powerful energy beams had to pass through the pelvic floor and surrounding tissues. Even though radiation oncologists target the prostate as precisely as possible, healthy tissues—including the complex web of nerves in the pelvic region—absorb some of that energy.
Here is how that can translate into full-body or widespread itching:
• Disrupted Nerve Signaling: Radiation can injure or cause localized scarring (fibrosis) around microscopic nerve fibers. If the nerves that normally transmit sensory signals are damaged, they can start misfiring. Instead of sending a signal that says "pain" or "touch," they continuously fire a phantom signal that your brain interprets as a deep, unyielding itch.
• The Pelvic-Systemic Connection (Cross-Sensitization): The nerves in your pelvis share pathways and "switchboards" in your spinal cord with nerves that travel to other parts of your body. When nerves in the pelvic floor are chronically irritated, it can trigger a state called central sensitization. Essentially, the central nervous system becomes hyper-reactive, turning quiet nerve pathways throughout your entire body into an active, generalized itchy or crawling sensation.
• Neuropathic vs. Dermatological Itch: This explains why standard allergy medications (like antihistamines) or standard lotions don't work for you. A regular itch comes from histamines in the skin; a neuropathic itch comes from a misfiring nervous system.