I created this page within the first week after completing my Salvage Radiation Therapy. I’m sure, as time goes on, I’ll be editing this page as circumstances change. Please check back regularly; I’ll post the date updated at the bottom of the page.
One of the things that has been at the forefront of my treatment decision-making has been maintaining quality of life, and that certainly came into play when my PSA first became detectable again in September 2015.
After my surgery in January 2011, incontinence became a nuisance issue, and sexual function was minimal. Any additional treatments like Salvage Radiation Therapy (SRT) or Androgen Deprivation Therapy (ADT) were likely to worsen those side effects and possibly add new ones. Needless to say, I was not ready to rush into something that risked further degrading my quality of life.
My Thought Process
When to Start
Even though the risks are generally small, SRT could bring further incontinence and sexual functioning issues, urethral strictures from radiation scarring, and potential bowel control problems. None of those—despite the small risks—were something that I was eager to embrace.
My PSA becoming detectable again was unfortunate, but the way it behaved afterwards allowed me to slow my panic down and breathe a little. In September 2015, it was 0.05 ng/ml; in December 2015 it dropped to 0.04 ng/ml; in April 2016 it was 0.08 ng/ml; and in August 2016, it was back down to 0.05 ng/ml. In November 2016 it was 0.06 ng/ml and, from that point on, continued to slowly increase over time. It wasn’t until June 2021 that my PSA hit the traditional threshold for biochemical recurrence: 0.2 ng/ml.
If you read current research, you’ll come across two schools of thought when it comes to doing SRT after surgery. First, if your PSA has three or more consecutive increases regardless of the PSA value, you should do SRT. Second, the earlier you start SRT, the better the chances of long-term success. According to those guidelines, I should have had SRT five years ago in 2017.
But those aren’t the only factors that should be considered when deciding to move forward with SRT.
In my case, my prostate came out cleanly, meaning there were no positive margins, no seminal vesicle involvement, no lymph node involvement, nothing. My pathological Gleason score was 3+4 indicating low-intermediate cancer aggressiveness, and my PSA doubling time was being measured in years, not months. When my medical team and I weighed all of that together, we collectively agreed that active surveillance of my increasing PSA would be relatively low risk. We also agreed that there would be a point where action would be needed if my PSA got to around the 0.2 ng/ml mark, give or take.
But there was one other factor holding me back from starting SRT: blindly zapping the prostate bed not knowing if the cancer had already spread elsewhere.
Where to Zap
I was reluctant to risk the possible long-term toxicities of SRT based on a hunch. (Okay, it’s more than a hunch because statistically, recurrent cancer has a high probability of being in the prostate bed.) I wanted to find out where the cancer was located before the zapping started to ensure we were zapping in the right location. If the cancer had escaped, zapping the prostate bed didn’t make sense. (That was before I saw the study results I posted earlier this week.)
Unfortunately, none of the traditional imaging methods—bone scan, Axumin, Choline—would be sensitive enough to pick up signs of cancer at my PSA levels. For those to work, my PSA had to be over 1.0 or higher. But PSMA PET scans were FDA authorized at UCSF and UCLA in December 2020, and my research had shown that a PSMA PET scan had about a 40%-50% chance of picking up cancer locations at my PSA level.
After three months of going back and forth between the VA, UCLA, and my insurance company, I finally got on the UCLA PSMA PET scan schedule for a scan on 30 November 2021. The good news was that the scan didn’t find any cancer. The bad news was that the scan didn’t find any cancer, meaning that we would be relying on those statistics and zapping the prostate bed if I moved forward with SRT.
I met with my urology team in January 2022 to go over the scan results and my most recent PSA tests—it was now at 0.26 ng/ml—and we agreed to set up a consultation with a radiation oncologist (RO). I opted for treatment at UCSD and we set up an appointment in February 2022.
The reason I shared my thought process is that I wanted others to understand that, just because your PSA is rising after surgery, that doesn’t mean you have to get SRT right away. Other factors can and should influence your decision.
I’ve had seven years without radiation side effects by delaying my treatment from the time my PSA first became detectable again. Is my approach the right approach for others? Certainly not. Each of our cases are unique. If you have a more aggressive form of cancer or positive margins or a fast PSA doubling time, you may not have the luxury of time that I had. Plus, we don’t know how my roll of the dice will turn out. Perhaps I waited too long; perhaps the SRT/ADT combination will be effective. Time will tell.
Meeting the Radiation Oncologist
During the meeting with the RO, he explained my options and his preferred course of treatment for me: seven weeks of radiation (70 Gy total) with concurrent ADT. Because my PSA was beginning to accelerate in its growth, I was generally okay with that plan. I wasn’t totally sold on the ADT, but was open to it.
Life, though, had a way of throwing a curveball that slowed things down a bit.
During the UCSD meeting, the nurse took my blood pressure and it was really high which surprised me because it had been normal in previous exams. Not long after, I was starting to have headaches and some other things going on, so I went to my primary care physician to get those checked out. I told the RO what was going on and he agreed that it was important to get those under control before starting the radiation.
By the end of April 2022 those issues had been resolved and I went for my six-month Eligard shot to start the ADT on 3 May 2022.
Starting the Radiation
UCSD uses image guided radiation therapy, so they had to get a baseline “map” of my pelvis to create the radiation plan and have a reference to make sure I’m properly aligned on the table before each zapping session.
The mapping required me to have a full bladder and an empty rectum, which I would also be required to have for each of the 35 sessions. I practiced filling my bladder for a few days before the mapping appointment, and that helped. The RO said I just needed to have a bowel movement before the session to empty my rectum; nothing else would be required.
The mapping session was very much like going for a CT scan or an MRI. You’re flat on a table with your shorts and underwear pulled down to mid-thigh (and a sheet over your bits and pieces), and you remain stationary while they take their images. Because they use lasers to align you for subsequent sessions, they need permanent reference marks on your body, so they give you three tattoos: one below your navel and one on each hip. They aren’t any larger than a ballpoint pen mark on your skin. The whole process took about 30-45 minutes as I recall.
We did the mapping on 16 June and started the radiation on 7 July 2022.
Going into this, I knew the toughest part of the zapping sessions would be having a full bladder, so I practiced the timing for about five days in advance of my first appointment. That nerdy exercise paid off for the most part.
They directed me to drink 32 ounces / 1 liter of water prior to the session, and to have finished drinking the water 30-45 minutes in advance of my scheduled time. They also told me to wear gym shorts with an elastic waist (no metal) to make it easier on the table.
My scheduled time was 9:45 a.m., so I would begin drinking between 8:30 a.m. and 8:45 a.m. to be finished between 9:00 a.m. and 9:15 a.m. (leaning toward the later start/finish times to account for any delays that may happen, and there were several). But, for some reason in the last week or so of treatment, I was coming up short and would start drinking between 8:15 a.m. and 8:30 a.m., and that helped.
The actual process was quite straightforward and quick:
- Lie down on the table.
- Get covered with the sheet.
- Slide your shorts and underwear to mid-thigh.
- Technicians may scoot (muscle) you around on the table to get the lasers on your alignment tattoos. (Just pretend to be a sack of potatoes during this part and let them do the work)
- The table slides into the machine.
- Arms come out and do the imaging needed to perfectly align your pelvis with the baseline map. (Some computer generated movements of the table may make this happen).
- The radiation head rotates 360° around you for about 90 seconds.
- There’s a brief 30 second or so delay.
- The radiation head rotates 360° around you in the opposite direction for about 90 seconds.
- The technicians enter the room and withdraw the table and you from the machine.
- You pull up your underwear and shorts, hop of the table, and make a beeline for the toilet to empty your bladder
- Repeat 34 more times.
It was comforting to me to know that they were checking the condition of my bladder and rectum before they started zapping because, if things weren’t right, that would lead to some of the long-term toxicities associated with SRT.
If things were running on time, the whole process took about 15 minutes or less. If I came up short on my bladder filling, or there was a delay with the patient ahead of me on the schedule, that could stretch to about 45 minutes. Even with my weekly doctor’s consults after the treatment, I would be out of the office in less than an hour.
Short-term Side Effects
The short-term side effects from the SRT are cumulative, so they creep up on you over the course of the treatments. Fatigue and urinary frequency were the two significant side effects, followed by some changes in incontinence and very minor skin irritation.
Because it’s really important to stay hydrated throughout the treatment, you’re encouraged to drink lots of water all day long. That will help with keeping a full bladder for the session. What that translated into for me, though, was trips to the toilet every 60-90 minutes during the day, and 3-7 times during the night. It was those night runs that frustrated me the most and, I’m sure, contributed to the fatigue.
I was prescribed Flomax (Tamsulosin 0.4 mg) to help combat the urinary frequency. To be honest, I’m not sure that it really helped much at all.
As you’re being radiated, the beam hits both bad cells and good cells around them, and it’s your body’s efforts to heal the good cells that lead to the fatigue. Initially, it wasn’t too bad, but by the time I hit Week 5, it was pretty substantial—almost to the point of being unable to do much of anything but rest.
I would force myself to get out and do a few things and I would feel energized while I was out, which was great. But about an hour or two into whatever I was doing, the fatigue would hit fast and hit hard. I’d have to stop what I was doing and return home to rest.
Near the very end of my treatment, I noticed my incontinence worsening slightly. Before, I would have minor stress incontinence episodes when I sneezed, coughed, or lifted something heavy. Week 6 and 7, I was noticing increased leakage just standing up. I spoke with the RO about it and he said that was pretty normal from all the irritation to the area. I’m sure the volume of water and the Flomax may have contributed to it as well. As I write this five days after the end of my SRT, the incontinence seems to be slowly returning to where it was pre-radiation. That’s good.
I found my skin below my navel to be itchy for a brief time around Week 4 or 5, and the nurses said I can just use a regular moisturizing lotion to treat it. They admonished me, however, to not use it just before the treatment. After was just fine.
There was one day where I noticed blood on the toilet paper after a bowel movement, and that was a bit scary. Fortunately, it was a one-time occurrence and, again, something that can happen somewhat routinely late in the treatment apparently.
For me, the biggest challenges were keeping the bladder filled (I was pretty OCD about that) and the fatigue. The RO said the fatigue should last for about two weeks after the treatment ends, and then I’ll “turn the corner.” Let’s hope he’s right (I’m writing this five days after ending treatment).
Because the ADT dose won’t begin to wear off until November or later, it will be difficult to see if the SRT had an impact on my PSA. Realistically, it probably won’t be until next spring or summer that we actually know whether the SRT was effective.
Updated: 31 August 2022