progress report...

skl8r

yesterday, October 14, I had my final radiation treatment so I thought I'd share my experience so far. I'm 67, in good health with elevated risk for colon cancer (it took my Dad and I've had colonoscopies since my early 40s, dozens of benign polyps removed through the years since, I have one of the risky genes.) Taking care, working out, lifting weights for the last 6 years.)

I had a slightly elevated PSA at 4.2 in January on my annual checkup - which my primary care doc wanted to retest in 6 months. I visited my urologist in March for a little help in bed, which I think is not unusual at my age. I did have a little concern about the 4.2… He did the dreaded digital exam and felt the tumor.

MRI in April came back with a score of 5, biopsy in May gave me a Gleeson 4+4 on one core, PSMA PET scan in June showed no signs of spreading (the first good news ;) I was stage 2a. I took a little (little!) time and educated myself and consulted with multiple surgeons and radio oncologists. For my age and diagnosis, I understood that outcomes would be equivalent between surgery and radiation. I chose to go with: ADT for a year and a half (Orgovyx), HDR brachytherapy, and 5 weeks of external radiation (IMRT, though proton therapy was available to me.) The later genetic test of the biopsy tissues came back high-risk so ADT was extended to 2 years.

I started hormone therapy in July, about 7 weeks later I had one hdr brachy treatment (15 Gy), two weeks later was my IMRT simulation, two weeks later started daily treatments 25 days at 1.8 Gy per day) all totaling 60 Gy of radiation. (Gold pellets used as targeting markers were implanted during the brachy.)

Taking Orgovyx isn't like taking a pill for a headache - driving testosterone down to nothin' IS going to have some effect. I've had periods of fatigue, hot flashes (yes, NOW I KNOW), together or separately. That has been a little unpleasant but not debilitating by any means… I was up for it.

From all my reading and questioning, I thought that daily radiation would be a cakewalk - I'd handle any side effects from the hormone therapy and it would be a lot easier to deal with than a radical prostatectomy. I still think so, but it wasn't all a bed of roses.

It took a week to fully recover from the HDR brachy - I thought it was just slowly recovering from anesthesia, etc. Now I believe it to have been recovering from the bodily insult of the 15 Gy of radiation. This was fatigue and fuzzy thinking that I didn't expect. When I had the IMRT simulation I got my first hint… bladder pain from filling it past the point of pain and holding it there :( while I jumped from scanner to scanner, MRI, blah blah…

Daily treatments started very easy, I learned how to keep my bladder full on a schedule - required for the treatment so the targeting could easily match the treatment plan. By the 4th week, I started to really feel the effects… radiation isn't targeted at but still passes through the urinary tract area, right? Not to mention all that stretching of the bladder. So the whole urinary tract is irritated to say the least. I had the symptoms.

Urge. Frequency. Did I say urge? Did I say frequency? My record is getting up 6 times overnight to pee. (I don't doubt many men have worse, but that was my experience.) The last few days of dailies were miserable - timing the full bladder, keeping it full while a new patient in front of me on the schedule consistently took an extra 15 minutes (poor guy in a wheelchair having to get up on the treatment table - all sympathy to him, but my bladder still suffered… walking around trying to control myself 😖) THIS is what they don't tell you about. Now you know enough to be unsurprised anyway.

Fatigue. Toward the end of the dailies there were days when I felt like a jellyfish. On the beach. Fatigue doesn't express how utterly depleted I felt. Other days I felt great. I could vacillate between normal and flacid 2 or 3 times in a day.

I'm high risk (4+4, plus the genetic test) so not completely out of the woods yet. Another PSMA PET scan in a couple months. ADT for two years total.

I had bloodwork after 3 weeks of daily radiation - Testosterone was undetectable and PSA down to 0.12! The timing for those numbers isn't a guarantee - it takes time for the radiation therapy to fully eradicate the suspect tissues (they're quite damaged but still need to be cleared out by normal bio functions.) However, I'm quite confident in the Drs' prognosis. BTW, my PSA never did get measured above 4.2

Got this beat! …and I'll never fill my bladder to the bursting point again! 😄

(Treated at Atlanta's Emory Winship Cancer Institute.)

RING THAT BELL

swl1956

Congrats on your progress!

I can't agree more that doctors aren't very forthcoming about bladder issues during imrt. I struggled to hold my urine especially during the second half of forty treatments. Not a pleasant experience! Best wishes on your journey going forward.

LuckyKYGuy

I am glad to hear it has worked for you. I turned 60 and had to make the decision a little over a year ago. I weighed the pros and cons. Obviously we are all different but i chose the RARP and I have zero regrets.

Josephg

Interesting discussion on full bladder issues experienced during IMRT. I had no such discomfort issues during my 38 visits to receive radiation. I was given a specific large cup before my first appointment, and I was told to empty my bladder, then drink the entire cup filled with water, 1 hour before the scheduled start of the radiation treatment. I still have that cup, 12 years later.

I did have one session delayed 15 minutes, when the Tech told me I had to make a bowel movement to properly position my large intestine before radiation was applied.

swl1956

https://csn.cancer.org/discussion/comment/1724857#Comment_1724857

I think you were lucky Josephg. I've spoken with several that have struggled with the full bladder issue. I guess it affects us all differently. I was told to empty my bladder then to drink 30 oz. of water one hour prior to appointment. There were several times I did not make it. Having to run in and pee before my allotted time. They were understanding and gave me some time to refill. On one occasion, I was unable to make it to there. Thank god I kept an empty liter bottle in my car. Lols! Evidently some individuals bladders fill up faster than others. It was a stressful challenge for me even causing me to have to stop the treatment and jump off the machine a couple of times before the treatment was concluded. I dreaded every day especially the second half of my treatments which were worse than the earlier ones.