Connect
Why I am glad I chose Proton Therapy (for now). Good, bad and ugly.
My Treatment Decision Journey – Surgery vs Radiation (Proton Therapy Experience)
Making the decision about which prostate cancer treatment to pursue was agonizing.
When I was first diagnosed, my urologist made it painfully clear that surgery was my best—and essentially only—option. No other treatments were really discussed, other than a general warning that radiation had “lots of downsides.” Based on that, I scheduled surgery a couple of months out.
A few weeks later, I randomly ran into a guy who had undergone proton radiation therapy. He described minimal side effects, a fast recovery, and years later his PSA was still nonexistent. That conversation completely changed my trajectory.
I dove headfirst into research and consultations. I spoke with:
• Mayo Clinic
• UCLA
• A local radiation oncologist
• California Proton
The 5-treatment MRI-guided SBRT option was intriguing, but due to pre-existing bladder issues, I was advised that my body would likely tolerate longer-course radiation better. After a very thorough and reassuring consultation, I ultimately chose California Proton.
Before going further, I want to be very clear: each of us has to make our own decision, and we should support one another regardless of the path chosen. I am not speaking negatively about surgery—since then, I’ve met several people who are very happy with their surgical outcomes.
Diagnosis Details
• First diagnosed: May 2025
• Initial MRI: PIRADS 4
• Initial MRI lesion: 0.9 mm
• October MRI: upgraded to PIRADS 5, with lesion growth to 1.6 cm
• Biopsy: Gleason 3+4 = 7
That PIRADS 5 upgrade and lesion growth reinforced for me that this wasn’t something to watch indefinitely and that I needed to move forward with definitive treatment.
I had been on testosterone replacement therapy (TRT) for 9 months prior to diagnosis, and it had changed my life for the better. The idea of hormone-blocking therapy honestly scared me. All four physicians I consulted with told me I would not need to stop TRT, and I truly believe that helped keep my body stronger throughout treatment.
Treatment Experience
I temporarily moved to San Diego for what I jokingly called my “Cancer Vacation.” I won’t lie—75 degrees and sunshine near the beach helped my mental state tremendously.
I completed 20 proton therapy sessions.
The Good
Treatment itself was very easy.
My main daily challenge was bladder filling—I tended to retain urine, so I often had to sit in the bathroom and will more urine out before treatment.
The Bad
Around week two, urination became more difficult and painful. I started on Flomax, which was later increased to two pills per day, along with higher doses of ibuprofen. This helped, but only moderately.
I didn’t experience sudden urgency, but when I needed to urinate, it came in bladder spasms with very weak and stingy flow.
I also had several days of extreme exhaustion. My routine was to go to a CrossFit gym every morning, and I usually felt strong and energized. But by mid-day, I’d get hit with overwhelming fatigue—easily fixed with a solid nap.
The Ugly
About three and a half weeks in, I started getting gassy. One day, I stood up to urinate and realized my brain could not get my urinary sphincter to open—yet my anal sphincter would open without warning. I had to spin around quickly and sit on the toilet.
Gas would pass, along with very bloody mucus from my rectum.
For about two weeks, I lost the ability to control which sphincter would open first, so I learned to just go in and sit. I experienced intense rectal and bladder spasms, sometimes breaking into a cold sweat. The good news: it only lasted a few weeks.
Sexual Function
This was a major concern for me.
I take 5 mg tadalafil daily, which helps, and TRT has also helped with ED. For sexual activity, I may double the tadalafil dose, and it has worked very well—huge relief.
Dry orgasms are definitely an adjustment.
One Month Post-Treatment
I am now one month out from my last treatment:
• All rectal side effects are gone
• Urinary symptoms are much improved
• Still on double-dose Flomax, but planning to drop to one pill next week
We’ll see how the future plays out. Radiation side effects can appear 6 months, a year, or even two years later, so my fingers are crossed.
For anyone currently trying to decide what path to take—it is not an easy decision. I hope sharing my experience helps in some small way.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Yes, I am still on FlowMax. I have tried stopping it a couple of times and while I could still urinate, I had to strain a bit.
Taking it just makes going a bit easier. I may try stopping it in a month or so and see.
-
Like -
Helpful -
Hug
1 Reaction@robertov
Hi thanks for talking to me. Yeah I guess knowing what to expect helps. Drs are supposed to tell you. Yup the pain med will ness up your digestive track but again what do you do if you have pain? Anyway I’m supposed to get VMAT which is supposed to be pretty good but it’s side effects I read are harsher that proton.. my radio oncologist says he will treat me like if I was his dad, yeah okay but he can’t stop radiation side effects. He said he would gladly give me a letter of referral for proton for my insurance company in order to get it approved. But he convinced me that the difference between VMAT and proton was substantial. But now I’m not so sure the more I read the more I’m scared and believe proton is better. Anyway I gave my prostrate no surgery after 1 Lupron my PSA dropped really fast in under 2 months .02 from 12-14 before. I’m switching to Orgovyx for allergy reasons to Lupron. How are you doing now and you say your effects were pretty mild .. that’s encouraging to me.. thanks for your support. God bless
@mlewelling wow im glad you are well. I have no surgery and dont want it. I’m responding well to Lupron 1st shot in oct21 by Dec 12 my PSA etc were awesome results very low .02 PSA my regular doc was blown away. Anyway my urologist sux I am switching to a new oncologist to get on Orgovyx because Lupron can cause Steven Johnson syndrome and I had a bout with that in 2012-13 I was lucky to survive it getting really bad. Anyway I have to get my ins to approve proton in Atlanta at Emory. They already have all my records negative PSMA, biopsy all that stuff. I live in Puerto Rico - proton is not available. VMAT is and it’s a good procedure much better than all the others. But I believe PROTON IS BEST. My oncologist convinced me to do the VMAT even though he would write a letter for insurance to pay for it in Atlanta. Now in reading a lot in here and people like you I’m gonna try to get the approval.. if I fail at least I tried. I don’t really think doctors understand that getting you bladder and rectum blasted with x-rays is eventually treatable or NOT. Frustrated in PR. Thanks for the input my friend .. god bless
@mlewelling btw 5 mg talafadil a day works I take it also cause it has a negative effect on cancer cells and enlarged prostrate too
Take care
Thanks for sharing!
I had my barigel and markers placed a couple of weeks back and start my 5 sessions of Proton Monday. Here's to hoping that 5 high intensity isn't as rough as what you describe with 20, but still glad to start killing this. I still feel weird saying "I have cancer."
I will relate my proton experience in hopes that it helps others. I had the five fractions done over a two week period. It started with Monday Wednesday Friday then skipped Saturday Sunday. Monday resumed again with a Tuesday and Thursday finish up.
Starting the very first day about two hours after treatment, I could feel a very slight UTI type of symptom. This became much more evident after the second treatment. And worse still after the third treatment. At this point, I let my caregivers know and they recommended taking two Advil‘s every eight hours and they prescribed Flomax. This made things a whole lot better. And with the fourth treatment, things got noticeably more difficult. So the place where I was treated I was ready to ask for a pause on the radiation. The caregivers recommended not doing that and I did finish the fifth treatment. At that point UTI type symptoms got worse still. I eventually ended up using 600 MG of Advil three times a day 1000 MG of Tylenol in between the Advil dose three times a day I used AZO for about a week and I’m still on Flomax. Although now one month post treatment, I’m using the Flomax every other day and 400 mg advil at bed time. Those are the only meds. So I am much better off now Actually about 35 days post the last treatment. My symptoms peaked about a week after the last treatment. They were always manageable. I never had any rectal issues at all. My pre-treatment preparation was four Fudicial markers and space oar.
Daily treatment regimen was an enema that I did about one hour and a half before treatment and 16 ounces of fluid intake that I did one hour before treatment. I tried to duplicate precisely what I did the day that they did the planning scans. I have no idea if that made a difference for me or not?
Best wishes and God bless to any man making these decisions. They are not easy.
One of the biggest problems for me has been sleep disruption, which is a side effect of the Flomax and the Firmagon ADT treatment. And I reached out to my treatment facility and basically they just said to go away and talk to my PCP. Which I thought was very odd for them to do that. Basically provide me with no help in that realm.
-
Like -
Helpful -
Hug
1 Reaction