Starting Proton Treatments for Prostate Cancer: Any experiences?

@desertrat, I was diagnosed with prostate cancer in June '21 at the age of 73 and with a 6.5 PSA. Like you, I was Gleason 7 (3+4). Had no side effects during or after my 28 Proton-only treatments. My first follow-up PSA is next month (March '22) so I'll know more about my current situation then. According to my radiation oncologist, I should expect this PSA to drop by 50%, followed by another 50% reduction at 6 months, so stay tuned!

Happy trails to you.

jacksaunders, completely agree with your advise to billmoskowits. My urologist wanted to do biopsies via rectal as I have heart failure and was concerned about my heart. I think it is just easier as is done in office versus hospital. I disagreed with doing that way telling him have had multiple surgeries since heart failure and my cariologist has no problem with me having general anesthesia. I asked him to check with my cardiologist as I did not want to have rectal only if absoluelty needed.

I was also told there was 2% chance of serious infection if done rectally and virtually none if tranperinial. I did not like the comment to me: "oh even if you get the infection you would only have to stay 2 days in hospital." My cardiologist confirmed to uroliogist general anesthisia okay and I had it done that way.

I say all this as each of us needs to be proactive and speak up. If you question something question it. Seek second opinions, seek more advice. As you can see the easy way for your urologist was not good for you. So your advise of having it done transpeinal and under general anesthesia is what I would have said too.

The anethesist I had was same one I had for a recent colonoscopy and knew me. He said you won't have a problem but I will be monitoring you.

For the Space/Oar and markers I had it done transperinial at UFPTI. It was done with lanicane and laughing gas. Was more of just uncomfortable than painful. They have your legs wide apart and up.

I would like to know from others how they got their Space/Oar and markers done.

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.