Starting Proton Treatments for Prostate Cancer: Any experiences?

@georgemc
I was put on Orgovyx and Cymbalta,gabapentin. They did make me tired but I was able to do things. I was doing 30 minutes on elliptical daily. After being on these for 4 months I started 38 sessions of IMRT. I am currently on session 35. I come home and sit on my couch and go into a dazed state. I come out of it at some point and go out for a 3 mile walk. I have not been able to do the elliptical. I had to much muscle weakness and also got into radiation which trouble with fluids and electrolytes due to diarrhea. While the Orgovyx made me fill weak the radiation put it to another level. This is also true for being tired. I am completely out of it if I stop and have zero energy several hours after radiation. I am better on the weekend when I do not get radiation. The radiation is affecting me. I stop radiation Thursday and stop adt at six months which is Thursday and will start my “rehab”and PSA testing. Even though the radiation added to my weakened state the adt affecting me with mental changes, weakness, hot flashes, was by far the worst part.
Wishing you the best and the best wishes to everyone else. This whole thing has been a journey for me and everyone else and I hope it will stop. Everyone is affected differently and handle it in different ways. I have taken what I learned from others to help me. Thank you everyone

@jc76 general Anastasia no pain or discomfort

@desertrat As I approach my 5 year anniversary, PSA is 0.27 as of 6/12/2026 blood draw (new nadir).

I just finished 42 weeks of proton therapy at Hampton University Proton Cancer Institute (HUPCI). Concurrent with my proton therapy, I am undergoing ADT, which will continue for another four months. I am including information on ADT since many recipients of proton therapy undergo ADT concurrently. The purpose of this posting is to share my experiences and as an “FYI” for fellow Mayo Connect readers, as well as to invite comment.
By way of background, I am 90+ years old, with medical benefits covered by original Medicare. As a military retiree, Tricare for Life (TFL) covers the 20% of a Medicare-approved treatment which would normally be paid by the patient. It also covers prescriptions not covered by Medicare. I am in generally good health, except for arthritis, moderately high blood pressure (effectively dealt with by relatively low doses of meds), neuropathy in my legs and feet and recently diagnosed sleep apnea leading to use of a CPAP. I try to make it to the YMCA daily, M-F, for 20-30 minutes of largely cardio exercise, mostly walking on a treadmill.
When the decision is made to proceed with proton therapy, the patient is scheduled for a “simulation appointment,” a preparatory procedure. The radiation oncology team needs to plan the exact radiation dose, treatment duration and position of the proton beam. During this appointment, the care team does the following:
Takes images of your prostate
Uses computer software to map the location of the tumor and surrounding areas
Positions you for treatment
Marks on your body where the beam will enter
Fits you for positioning devices to keep your body still during treatment
Also during this appointment your care team will probably want to implant fiducial markers in the prostate as guides/reference points for the planned proton therapy. They may also elect to place a spacer consisting of an absorbable gel (Barrigel), which is perineally injected between the prostate and the rectum. This is all done under light sedation. In many locations providing proton therapy, this is the only step taken to protect from stray radiation. HUPCI, however, takes an additional step. On a daily basis, preparatory to each radiation session, an inflatable balloon is inserted into the rectum and inflated with a saline solution prior to commencing the treatment. I am told this provides additional protection, especially to the apex the gland. The balloon is removed at the end of the session.
My course of treatment at HUPCI was largely uneventful. A surprising feature of proton therapy regimens described in Mayo Connect conversations is the wide variation in guidance provided regarding diet and pre-radiation bowel and bladder management. At HUPCI, the only guidance provided regarding the bowel was to avoid foods causing constipation. Other than that, no limitations, and no exhortations to present oneself with an empty bowel. Nothing even close to the requirement for daily enemas reported by some. There has been no guidance, or even simple suggestions relating to eggs, dairy products, coffee and spicy foods. After 30+ years in the Navy, I have become accustomed to coffee - a lot of coffee. I normally make an 8-cup pot in the morning and finish it off in the course of the day. I have made no adjustments to my diet in any way. And I continue to enjoy a glass or two of wine with my dinner 3 or 4 times a week
All locations seem to strive for a full bladder at the time of treatment, requiring the patient to drink copious amounts liquids within 40 minutes of the treatment. In my case, that was 32oz. I have no idea as to why bowel management is dealt with in such disparate ways.
My medical oncologist prescribed Orgovyx for my ADT. However, TFL did not approve use of Orgovyx, advising us to use a lower cost “approved” ADT option. As a result, ADT started with a Firmagon injection. A month later, TFL, in response to my appeal, reconsidered the original request, and authorized a change to a daily Orgovyx tablet.
The most common complaint I have seen described in Mayo Connect as related to ADT is the problem so many have with hot flashes. I have had only “warm flushes,” nothing really all that uncomfortable. The only step I have taken to counter these “warm flushes” is to throw off a blanket now and then at night. I take the Orgovyx in the evening and have had very few “flushes” during the day. An area of greater concern, into which I am inquiring with my medical oncologist, is comparatively wide variations in blood pressure, and frequent episodes of lightheadedness. In recent days, I have experienced blood pressure as low as 87/59, with a pulse rate of 75, and as high as 197/136, with a pulse rate of 81. I would be interested to hear if any readers of this posting have had similar experiences.
I have not been beset by the more extreme side effects upon which others have commented in this forum. No painful urination, no diarrhea, no constipation and no blood in stool or urine. However, frequency has at least doubled and overnight visits to the bathroom have gone from one or two per month to one or two (occasionally three) per night. I find having a weak stream and an inability to empty the bladder in a timely manner to be bothersome. If seated on a commode, the first increment of urination is usually 2–3 ounces, followed 1-2 minutes later by anything from a dribble to an ounce, followed by another 1-2 minutes delay, leading to another dribble of up to an ounce. This goes on for 8-10 minutes. I have found it advisable to be very wary of “bearing down“ to force the issue on urination, as I have had several close calls wherein I almost had an unintended bowel movement. This is particularly an issue when in public places using a urinal.
Thusfar, I have been unable to determine which of the concurrent therapies, proton beam or ADT, has caused the most pronounced negative side effects. The most impactful have been extreme fatigue, weakness and muscular pain, all of which are identified as potential side-effects of both therapies. The pain is effectively dealt with by taking 400mg ibuprofen. But fatigue and weakness are something else. By 2–3 p.m., my body is done. It seems to me that Orgovyx is likely the primary culprit in this regard.
Comments and/or suggestions as to how to deal with the side effects I have noted would be deeply appreciated.

My husband and brother both had proton therapy versus prostate removal. Both say they are very happy with that decision. Before his decision, my husband did extensive research and talked to 10 different men who had surgery. Only 1 of the 10 said they were happy with having it removed. Most said the incontinence and/or having to wear a pad/diaper were awful. That made the decision to do proton therapy much easier for him.

Has anyone out there had a problem with the interaction of Orgovyx and lisinopril? Since starting the ADT (with Orgovyx), I have experienced wide swings in my blood pressure, from a low of 87/59 to a high of 197/136, plus a large number of experiences with lightheadedness and instability when standing. My Primary Care Physician has taken me off the lisinopril, pending arrangements for me to wear a heart monitor for a period. I have a “normal“ EKG.

My friend had his removed but had standard radiation after and he was sick after each treatment and is still on medication. I've met many treated for prostate cancer and were never told of Proton. I brought up surgery and Proton and was told the results are no better. Proton and surgery have higher success rates and the side effects are minimal and quality of life afterwards is so much better . I knew this from reading a patient written book given out by the Proton place I used. He stood in front of me told me what I was going to do,no ifs ands or buts and lied about my Gleason score also. I'll never refer to him as a dr. I would have been dead years ago and before I would have had a terrible existence. My 3rd grand girl was born 1 month before I was diagnosed. Because of Proton I ride bikes with her everyday !

@kevlopota similar experience here minus the bladder issue. 40 proton treatments but only had to drive 60 miles. Well worth it, and felt safer with proton.

@dderiso Advantage plans are terrible. I have Medicare only and I went to 3 oncologists and signed up for each one in case I couldn't have surgery
When surgeon approved I dumped the other 2.

I had my prostate removed then a reoccurrenc. I was told it was bladder cancer and scheduled for radiation because as I was told, Proton is not for the bladder. Sent my info to a Proton place . It was a reoccurrence . Had Proton 6 years ago . No side effects . The techs that cared for me were the Best and they were a major force in my still being here. I was a Gleason 9 at the time of surgery. I had 41 Proton treatments and drove to every appointment . The drive was 165 miles each way every day 16,500miles in 41 days. GET IT DONE ! Change your diet ! There are foods that fight cancer. Ask your Proton nurse for help and suggestion. Get it done ,.