Connect
41-days of salvage RT - your experience with side effects?
Hello, First time post, but second go ‘round with prostate cancer. Let me start with my request to the group, then I’ll summarize my history.
I will soon start an 81-day regime of salvage, external beam radiation therapy (EBRT), targeting both a small nodule in by prostate bed (prostate was removed in 2015) and pelvic lymph nodes (unspecific activity with low SUV on PET PSMA scan). No ADT (explained below). I have gone over all the possible side effects of EBRT with my radiation oncologist and have read up on the subject, but given the 8-week regime for my EBRT, I am not very sure what to expect (especially compared to the 4-week regime that I know more about). If you have undergone EBRT of similar duration, I would much appreciate hearing about the side effects that you encountered.
Okay my background. I am currently 72. In 2014, I was diagnosed with prostate cancer (PSA and biopsy). PSA never exceeded 5.4. In 2015, I underwent a robotic radical prostatectomy. The surgery went well, but post-surgical pathology indicated Gleason 7 (3+4), positive margins, and Stage pT2c. Additional, genomic testing by Prolaris indicated my cancer was “considerably more aggressive than average intermediate risk” and a 10-year risk of BCR of 53%.
Because of the pathology report, I was under quarterly surveillance for five years (both PSA and DRE), then that was tapered to annual checks after year five. I went ten years with undetectable PSA (< 0.1). It was a good run. Also, in 2023, my urologist executed a urethral sling surgery that 100% cured my stress incontinence. That was a game changer.
This summer, my PSA rose above detection for the first time but only to 0.12. DRE revealed a small, palpable nodule in my prostate fossa. Given my risk factors for recurrence, this was followed immediately with a PET PSMA san. Good news was that there is no evidence of distant metastasis, but my prostate anastomosis lit up with a SUV of 13. As I mentioned previously, there was some nonspecific activity (SUV =1) in my pelvic lymph nodes. So, the evidence is fairly definitive for a local recurrence of the cancer (my urologist felt no need for a biopsy, and I fully agreed). I don’t know the doubling time, but I will be retested just before started RT, so will have a better idea about that soon. Just had a pelvic MRI yesterday, and will discuss that with my oncologist tomorrow. The odds for a cure a good, but as goes with prostate cancer, this can go many different ways, some better some worse. I am about as prepared for that uncertainty as one can be.
I am decidedly against ADT (as is my spouse) even though a 2023 study (the SSPORT trial) showed that it improved the odds of freedom from recurrence at five years. The same study showed no difference in survival rates. I weighed the risks and benefits of ADT and had a long conversation with my oncologist after perusing the 2023 study. I came to understand his point of view better, but in the end, his argument for adding short term ADT did not convince me that I would fare better in the long run. I highly value quality of life as part of my treatment. My oncologist was okay with my decision. Additionally, the drive to the treatment center is a 50-minute drive in urban traffic. That in and off itself is a "side effect" than I am trying to factor in. Extreme fatigue, moodiness, and brain fog don’t pair well with making that drive for 8+ weeks.
There’s my situation. Not my first rodeo with this disease, and maybe or maybe not my last.
If you can share your experience, especially side effects from a similar 8-week regime of EBRT, I would be most appreciative.
Best to you all. It’s a club no one wants to join. Glad to find this support group though.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
A few questions:
> isn’t an “8-week regime for EBRT” only 40 days, not 81 days?
> How many Grays of radiation each treatment?
As for quality of life with ADT, did your oncologist recommend resistance-training exercise? My medical oncologist recommended resistance-training exercise to minimize almost all adverse sude-effects - and it worked. (The benefits of ADT far outweigh the remaining adverse side-effects.)
> https://m.youtube.com/watch?v=YE61HSAsFb0
> https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx
Here’s what Dr. Kwon recommends for salvage treatment of recurrence: https://youtu.be/Q2joD360_pI
(For me, at 65y quality of life was equal priority with successful treatment. My quality of life was good throughout ADT.)
I had a 40-minute drive to the radiation treatment center each day (mostly highway). Being retired, I simply worked it into my daily schedule. My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. And the short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.
I experienced no fatigue, moodiness, or brain fog. (I attribute that to both the enhanced resistance-training and cardio programs that I engaged in.)
After my radiation treatments were over but while I was still on hormone therapy, I asked my wife if she had noticed any emotional changes in me: moodiness, crankiness, aggressiveness, anger, etc. She said that she hadn’t noticed any. She says that except for my complaints about warm flashes, low libido, and muscle atrophy, she wouldn’t have noticed that I was getting radiation treatments or on hormone therapy.
(If I had to do the ADT again to treat high-risk disease, I would.)
Good luck with your decision.
-
Like -
Helpful -
Hug
5 ReactionsThanks for the reply. Oops, bad typing on my part. Yes, it is a 41-day regime (8 weeks + 1 day), not 81 days.
Good to hear that you got through the ADT without any major side effects. And of equal importance, good to hear that your wife thought you did well. I’ve heard/read many stories that were just the opposite. And I know it’s different for every guy.
Yes, we discussed resistance training. I work out with hand weights at home, twice weekly, and I typically walk 8-10 miles/week, and try to get in a 10-15 mile bike ride/weekly.
The radiation dosage is planned to be 68.4 Gy for the nodule in the prostate bed and 45-50 Gy for the pelvic lymph nodes, prophylactically. The lymph nodes will be irradiated for only 28 days. All subject to adjustment, depending on what the pelvic MRI reveals.
My oncologist suggested Orgovyx for the STADT, largely because recovery from the side effects is quicker than, say, Lupron. Even with insurance, I would still have to pay $975/mo OOP for the Orgovyx. Big financial stress. Would do it if I saw a big upside, but that upside just isn’t there for me in my final analysis.
Thanks for your input!
Melvin:
My Salvage Radiation Treatment protocol at age 73 was very similar: IMRT 66.6 gys to prostate region; 45 gys to pelvic nodes; short term ADT.
Agree with recommendations above: I walked every day and lifted lift dumbbells for upper body.
My primary SE was fatigue: My 45 min walk became 50+ mins. Now back to 45. Definitely an effort, especially in hot weather.
Drove 70 miles each way to COE for 8 wks of tx. Would do it again.
RO and SPORRT trial convinced me to take ADT.
If you are on Medicare, you should max out your annual $ 2000 out of pocket expense in about two months of Orgovyx. However many have been fine with Lupron or other ADT meds that have more comprehensive coverage.
It was an 8 wks ordeal for me, but necessary and so far very effective based upon undetectable PSA readings for almost 2 yrs.
Best wishes.
-
Like -
Helpful -
Hug
3 ReactionsMany thanks for sharing your experience. Your situation sounds very similar. Glad it is working for you, and that you apparently got through the ADT with minimal SE.
Another thing about the SPPORT trial (which was a good study, agreed) is that it excluded any men who had a palpable nodule in the prostate bed. So, I would not have qualified for the trial. When I pressed my RO about this, he didn’t really have a good answer other than, ‘if we make an assumption…’.
Should know a little more today when I discuss the results of pelvic MRI with my OC.
I had 5 weeks IMRT + one high dose brachytherapy all the while on 6 months Orgovyx ADT. While I have had minimal side effects from all of this, I will say I am now 3 months post radiation and 1 week post ADT. Though I never had any hot flashes, I do occasionally get hit with short bouts of fatigue. They persist even though my treatment has ended.
I will say that compared to what I've read about Lupron and other older ADT drugs, Orgovyx is very tolerable. I would take it again if I had to.
-
Like -
Helpful -
Hug
2 Reactions