5 Years Since Completion of Proton Radiation

Congratulations on the milestone! I do agree that nearly forgetting it is a sign that things are as “business as usual” for you and yours. Great news.

@turtbean And yet, I have to admit that every 6 months when my MyChart indicates “you have another PSA test result” that I hesitate just a bit….” (June 29th will be that day.)

It has been 16 years since 2.5 months at Loma Linda for proton radiation therapy. PSA: 6.47 Gleason 3 plus 3. Slow growth prostate cancer localized. Upon learning from two biopsies, I returned to the US while selecting proton radiation therapy as the best option...and it was. About five years ago, my PSA began to gradually increase.
May of 2025 it was 7.43; May 2026 it was 12.4.

I have had two PET scan..one just two days ago, plus an MRI backed up by a PET scan one year ago. The results show nothing..no uptake in the prostate indicating prostate cancer. "Uptake" is a term the radiologist use as a function of the chemical used to "highlight" possible cancer. Cancer cells tend to bond together, and the radioactive chemical injected into your body binds to those cells, hence "uptake". Bottom line: "Go figure". I might add, no enlargement of the prostate indicating BPH or other.

@westernflyer Wow! 16 years - that’s great!

With your PSA increasing (7.43…12.4), and your PSMA PET scans showing no uptake in the prostate, a few thoughts:

> is there uptake anywhere else (other than the standard blood, liver, parotid glands, etc.)?

> since you were treated 16 years ago, and there were no PSMA PET scans back then, is it possible that your prostate cancers are PSMA-negative (or don’t produce enough PSMA to be detected)? They say that happens with about 15% of prostate cancer patients.

Both PET scans revealed little or no uptake. The scoring system is 1 through 4. My scores for each scan, one year apart, were scored at 2. The reading of the PET scan includes the thyroid, heart, lung and other functions of the body. The radioactive chemical, as mentioned, is injected into the body and attaches to the cancer cells. The scan "lights up" those cells for identification and location. The defining question is "why is the PSA increasing?".
I am US Army Soldier (11A) now retired. I have Tricare for Life..for those of you who do not know this..all active have TriCare..those of us retired have Tricare for Life. I utilize the VA. The PET scan was done at the Gainesville VA hospital. The scan was read by a radiologist at the University of Florida. I read her background and it is stellar in terms of education, publishing and time as a radiologist. I could use Mayo in Jacksonville, but the care and professionalism experienced at the VA was excellent. I check the "checker"..and after 16 years of dealing with prostate cancer (post proton radiation in 2010), I have become very informed. and thanks to this website for its informative approach. RH/Florida

@brianjarvis

OMG the BP skyrockets when I get that text! HAHAHAAAA

Great post - and it reminded to look at the calendar and see that I finished my 28 proton treatments May 16, 2025. I hadn't even thought about it! So yes, I'm pretty much back to normal, with the exception of the regular PSA tests, and the slightly anxious time waiting for the results, and very minor bowel and urinary issues - minor enough that they pose no problems in day to day living. Like you, I did a 10 mile run this morning and have dinner plans this evening.

Congratulations. I have a few questions, because I - like you - will choose Proton Beam Radiation instead of conventional Radiation Therapy, "if" my cancer returns. I am 14 months post-RP with a pt3b cancer that was barely a Gleason 3+4=7 at biopsy, but has a 25-50% likelihood of recurrence "within" five years. I am still only 98% continent (I still have some leaks), and my sex life is ZERO. My urologist said he spared the neurovascular bundles necessary for erections and optimal urinary continence, but I haven't had an erection in 14 months.
My questions are:
1) What urinary side effects did you experience, if any? Any ongoing, now-lifelong incontinence, burning, etc.?
2) What sexual side effects have you experienced? Do you have permanent ED? Did any of the common meds like Cialis or Viagra help, or did you not need them?
3) Any rectal/bowel consequences whether temporary "during", Proton Beam therapy, "just-after", or "ongoing."
4. Any additional long-term side effects (energy, weight, behavioral, etc.)?
5. Did your insurance company pay for the Proton Beam Therapy? If so, who is your insurance provider? I am now on a Medicare Advantage HMO Plan that may not pay for it, if/when I need it.
I ask because I read enough of all of the life-long side effects of standard Radiation Therapy, such that I will never do it if/when the time comes for it. I read that it of course targets the area(s) and destroys the cancerous cells (if successful), BUT that it also "passes through" to healthy surrounding tissue (bladder, urethra, rectum) causing damage to those health tissues, to include the permanent, life-long urinary incontinence that a RO told me during a consultation visit I had. He also mentioned likely rectal/bowel issues. I decided right then and there, that I will NEVER have standard Radiation Therapy. I will drive as far as I need to drive, in order to receive Proton Beam Therapy, which of course goes "to", but not "through" the target cancer tissue. There is no damage to surrounding healthy tissue.
Your story validates my research on standard Radiation Therapy vs Proton Beam Therapy.
Thank you, in advance, for your reply to my questions.

@rlpostrp In my case with a T2c (4+3), I chose proton radiation as my primary treatment for a number of reasons. (With such a good prognosis, I saw no need for a prostatectomy.). “If” my cancer returns, I have a number options, including focal therapy (like cryo), brachytherapy, SBRT (because they’re all very targetable), or possibly even re-radiation.

Your experience will be totally different from mine because you’re doing salvage radiation treatments. Your treatment parameters will be different from mine.

If you still want answers to your questions, I can still answer them.
==========

@rlpostrp Regarding nerve-sparing, when your urologist said he “… spared the (two) bundles necessary for erections….,” did he (or in the surgery report) indicate whether he spared 100%/0%? 75%/25%? 50%/50%; 25%/25% of the two bundles? “Nerve sparing” can mean many things - which can impact how long your recovery takes. Even simply moving the nerves damages them. So, depending on how much “damage” was done, impacts the outcome.

Regarding urinary incontinence, when your urologist said he “… spared the…..necessary for optimal urinary continence….,” did he (or in the surgery report) indicate whether he performed Retzius-sparing surgery? This is a specialized surgery if incontinence is the priority.

Or did he just do standard surgery and try to save some nerves?