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progress report...
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
Comments
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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.
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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.
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13 years must have included some luck and I'm sure some good decisions. I'm only 2 years into my journey and not feeling very lucky either. I hope you've had some periods of solice during those 13 years. I'm constantly stressed about what may be coming next, but hoping for some luck and a possible remission.
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I was being a bit facetious with my luck comments. I learned a long, long time ago not to feel unlucky for contracting PCa, nor feel sorry for my situation with PCa, nor get stressed out or complain about the PCa treatments themselves or the treatment side effects. Bottom line, all of that is counterproductive to quality of life.
You and I (and everyone here) were dealt a hand of cards in this life, and regardless of the content in that hand of cards, we need to play them. And, if we are smart, we will play that hand of cards to the best that we can. And, we will focus on the present and future, and forget about the past.
I truly don't believe in luck, nor do I believe that I've been unlucky on my PCa journey. It is what it is. Early on, I engaged a world class cancer institution to provide assessment, treatment, and follow-up for me on my PCa journey. All along my PCa journey, they have continually assessed, re-assessed, and recommended, and I have followed their recommendations. And, I am still here, and I enjoy more than an acceptable quality of life. Now, I am a Darwinian, and perhaps, that has a lot of influence on my outlook on life.
I can offer one life changing situation that I had early on my PCa journey that had a major impact on my PCa journey-related outlook. During my first ADT therapy series (yes, I've had more than one), I complained to my wife about how the side effects felt, and she turned and looked at me, up and down. Then, she said, "Just stop complaining about your side effects. Every woman goes through this, and for a longer period of time that you are going through, and do you hear them all complaining? Man up!". Well, talk about tough love. I've never complained about ADT side effects, or any other PCa-related effects since that time.
Now, discussion, like here in this Discussion Board, is quite different than complaining or feeling sorry for one's self. Here, we share information and experiences, and we offer constructive recommendations to fellow PCa journey members, to hopefully assist them on their PCa journeys and offer them content for improving their quality of life. And, this is a great thing.
I wish you the best of outcomes on your PCa journey.
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Thanks for your response Josephg,
Your wife was right. Nobody wants to hear complaining. My stepfather (now deceased) also used to say "you have to play the cards you are dealt". He was dealt some really bad ones dealing with MS. He endured a very difficult existence for many years. Ended up in a wheel chair with no use of his legs along with total incontinence. He kept his dignity throughout his journey never once complaining to any of us that were close to him. In fact, he always kept a very positive attitude. Thank you for reminding me of this mindset. Not sure I have the same resolve, but I'm trying. This discussion board has helped me vent my frustrations at times which has included some complaining. I'll try to be more thoughtful going forward.
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Nice report; it touches on many issues that patients who have had radiation therapy as primary treatment have encountered. This includes me (2 SBRT sessions followed by 20 IMRT sessions). The odd thing though is that I was never told to follow a certain bladder protocol while receiving IMRT at Georgetown U Medical Center; a top institution with respect to radiation oncology. I did not get the protective gel either because it didn't exist some ten years ago. But the leader of the prostate rad oncology group (Dr Collins) did tell me later on that they are using it nowadays.
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I've been being treated at a major cancer center of excellence in Philadelphia and when I asked my urologist / oncologist and radiologist about Spaceoar gel, both said it was available but didn't recommend it. It's only been a few months since finishing 40 - 2 gray sessions. So far, my bowels and urinary track seem to be working OK, but I must admit I'm having some second thoughts about not having insisted on it. Oh well, can't go back. These discrepancies sometimes makes me wonder if they know what they're doing.
It's a bit strange that you weren't instructed on a full bladder protocol. From what I understand that's been standard procedure for decades.
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Hi @swl1956
I had my prostate radiation at out local Cleveland Clinic facility in June of 2023. They had provided a measured container for water to drink after draining my bladder and before going to the treatment center. I had minor issues with "holding it" during the treatments, especially on the day my start time was delayed by 15 minutes.
I also inquired about the Space OAR and was told it wasn't necessary. About 6 months following the treatments I began having blood and mucus in my stool. My doc suggested getting a colonoscopy which showed that I have "radiation proctitis." The gastroenterologist put me on some suppositories that helped a little but the best relief came at the suggestion of a family friend that had the same situation - a big daily dose of Metamucil. The stool is softened and bulky making for easy daily movements. It's been quite a while since I saw any blood.
Now my concern is that the radiation damaged portion of my rectum is primed for rectal cancer😒
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Hopefully you won't have any future issues with this. I can't speak for anyone else, but the ongoing stress about discrepancies of opinions of healthcare providers is enough to cause me angina. At my last meeting with my urologist / oncologist he told me I'll likely die of something other than prostate cancer. My response was "yeah, probably from all these treatments you're prescribing" Luckily, he has a sense of humor. Lols! As intelligent as many of these doctors are, I think they're overloaded and constrained by their institutions goals to make money resulting in us perhaps not getting optimum care. We as patients are left to determine if we're on the right path. No easy task for the average fella like myself. Sometimes I feel like I'll just do what they tell me and let the cards fall where they may. Even knowing that's probably not the best approach.
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I asked about it and my radio oncologist didn't recommend… sure that I could have if I asked more strongly, but he found it inconsequential… maybe it makes planning and delivery more difficult.
My understanding of the full bladder requirement is that it helps have more consistent targeting on treatment days.
If I need another round of IMRT I'm up for it, knowing what to really expect is good tho.
BTW, I've been improving nearly every day since the last treatment (10 days now) - yesterday I regressed, but feel even better today! Hoorah… -
There are definite cons to protective gel applications:
It's expensive and requires practice. Patients have actually been killed early on when the application was new. Whether the gel will be useful will depend on the area to be irradiated and the local geometry of your prostate and its immediate environment. In other words, there are cases where a barrier gel is counter indicated.
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Congratulations and thanks for the detail on your experience. I had RASP July 2024. Gleason 3+4 and at 69 years old, I wanted it out and hopefully never have to worry about it again (but I still worry every PSA test).
The options for PC treatment all have some consequences. But at least there are options.
Best wishes on a full recovery.
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