r/ProstateCancer • u/mikestap11 • 2d ago
Concern Salvage radiation therapy 12 years after RALP
I had my RALP in 2013 and a solid ten years thereafter with undetectable PSA. Two years ago, the PSA became detectable and slowly growing until this last one, which had increased from its perevious 0.15 to 0.26. We decided to start 35-40 week course of RT to kill this bugger. I will first have a PSMA PET-CT in a few weeks and proceed with the course of treatment.
I have what may appear to trivial concern. The doctor explained I need to arrive at each treatment (arguably scheduled in advance for a consistent time) with an empty rectum. My bowel movements do not take place at the same time every day. The intervals between BMs may range from 8 hours to 35 hours. How can I get more regular?
I rarely eat breakfast. If I do have breakfast, I do not eat lunch. I'm assuming I need to get a more gegualr diet. I have stopped drinking alcohol. Thre days in, but I think I will be successful wit this. I have started mixing a heaping tablespoon of Metamucil with about twelve ounces of water and downing that each morning.
Is there anything else others could suggest? Thanks.
Edit: Format for readability.
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u/Intrinsic-Disorder 2d ago
Wow, sorry to hear it came back after all this time! I'd ask for a PSMA-PET scan to see if you can ensure the cancer is actually in your pelvis area vs. some other site in the body. Best wishes with the treatment.
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u/Far-Reward6050 2d ago
Yes my husband had his prostate removed in 2003 at the age of 52. He has his PSA tested every 3 months. He recently had his PSA taken in January 2025 and his PSA is at 3.4. His doctor tested again in April and it was 3.3. Doctor sent him for PSMA Pet Scan and it showed activity around where his prostate area where it was removed. Doctor will test his PSA mid September. My husband will be 74 in December. Doctor told him he cannot have radiation in the prostate are since they did radiation in that area and it would damage his bowels. Has anyone else experienced this before after prostatectomy? My best to you all.
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u/ChillWarrior801 2d ago
This. I read somewhere that the longer you've remained undetectable, the less likely you're going to be okay by just stomping on the usual pelvic suspects. There's a newer generation of PET-CT scanners that can detect distant mets even at OP's relatively low PSA level. Here's a paper that piqued my interest:
High Detection Rates for Prostate-specific Membrane Antigen–avid Prostate Cancer Recurrence at Low Prostate-specific Antigen levels on Extended Axial Field-of-view Positron Emission Tomography/Computed Tomography
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u/Far-Reward6050 1d ago
He did have the Pet Scan and it showed cancer cells in the area of where his prostate was removed. Doctor told him he cannot do radiation again in his prostate area cuz that was done 20 years ago cuz it could damage his bowels. When his PSA rises to a 10 then they will give him medication to lower his testosterone level. His PSA in June was 3.3. Will do a PSA test soon to see the numbers. He will be 74 in December. He was 52 when he was diagnosed with Prostate Cancer Gleason Score 9.
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u/BackInNJAgain 2d ago
An enema is always good for an emergency backup but shouldn't be the first line of defense.
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u/rockledge_360 2d ago
Prune Juice is amazing. Used an 8 oz glass of it everyday for the time I too had to arrive for treatments in the same state.
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u/bryantw62 2d ago
My daughter is a nurse and said all the nurses in the birthing unit were she worked recommend heating the prune juice a little. They swear it works better.
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u/Think-Feynman 2d ago
OK, so this is where it gets a bit counterintuitive. I don't know what treatment you are having, but often they insert fiducial markers in the prostate to guide the radiation. Obviously, you don't have a prostate any longer, but I am guessing they will do markers of some sort so that they can target the areas accurately. And, this is why they want you empty.
Gas is often the big culprit though, not just fecal matter. Gas moves things around and makes it tough to target. A low residue diet that is actually low in fiber is often what they ask you to adopt for a while. This is what I was instructed to do for my CyberKnife treatment.
It's a diet that restricts beans, most fresh veggies, and other gas producing foods like whole wheat bread, beans, cabbage, etc. Here is a guide:
Now, this is from a total stranger that doesn't know anything about your treatment, so don't follow this advice until you confirm that this is what they want you to do! But this was what many of us are instructed to do. Good luck!
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u/Think-Feynman 2d ago
Oh, and I was also instructed to do a Fleet enema an hour before treatment. Not exactly fun, but wasn't that bad.
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u/Special-Steel 2d ago
I drink water with electrolytes and magnesium in it as soon as I get up. This plus a cup of coffee is pretty reliable.
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u/ManuteBol_Rocks 2d ago
Sorry you have gone detectable after all this time. What PSA threshold were all those undetectable tests over the years? <0.01? <0.1? Something else?
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u/mikestap11 2d ago
The nomenclature use to indicate “non-detectable” was “<0.1.” The first detectable was indicated with "0.07."
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u/ManuteBol_Rocks 2d ago
That doesn’t jibe. You couldn’t have gotten a 0.07 if the test threshold was <0.1.
Was <0.1 just something your doc said was “undetectable”? For example, “I consider 0.07 as undetectable.” Or, “Don’t worry. You are undetectable until you get to 0.1” or something like that.
Sorry for the specific questions but this type of thing is important to folks who are undetectable after surgery but at a high risk of recurrence (like me). Thanks.
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u/mikestap11 2d ago
I asked and complained it made no sense to this engineer. Amyway, evidently the nomenclature "<01" with the "less than" sign is shorthand for undetectable. Notice the first detectable value (0.07) has no "less than" sign. Thus, the 0.07 was a measured valued.
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u/ManuteBol_Rocks 2d ago
What do you mean by <01 that you just wrote?
Do you mean <0.01 or <0.1?
This is the whole reason for my questioning.
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u/mikestap11 2d ago
As my doctor explained it to me, "<0.1" means undetectable.
"0.1" means detectable and measured
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u/VermicelliOk5906 2d ago
Bonjour, ok pour la signification. Mais pendant 12 ans on t’a dit indétectable par <0.1 et oui là on te sort un détectable à 0.07 ? Ce n’est pas très logique. Dans un labo il y a un seuil de detectabilité, le mien c’est 0.025, en dessous le labo met le signe < et il n’y a aucune valeur précisée. Donc toi à 0.07, tu est tjrs dans l’indétectable du <0.1…. Comment savoir si tu as une hausse sur cette période ? Maintenant si tu est passé à 0.15 la il y a bien une hausse et une valeur détectable au dessus de 0.1
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u/mikestap11 2d ago
Your discussion of PSA values and their timings is incorrect.
2021 Jan <0.1 undetectable
2022 Jan 0.07 dectectable, below 0.2 threshold standard of care
2022 Apr 0.10 dectectable, below 0.2 threshold standard of care
2022 Jul 0.10 dectectable, below 0.2 threshold standard of care
2023 Jan 0.10 dectectable, below 0.2 threshold standard of care
2023 Jul 0.11 dectectable, below 0.2 threshold standard of care
2024 Jan 0.12 dectectable, below 0.2 threshold standard of care
2024 Aug 0.16 dectectable, below 0.2 threshold standard of care
2025 Feb 0.15 dectectable, below 0.2 threshold standard of care
2025 Aug 0.26 dectectable, below 0.2 threshold exceeded
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u/ManuteBol_Rocks 2d ago
Thanks for the list of these. This verifies my point, which is that it’s impossible for that Jan 2022 PSA to have been the same assay as the Jan 2021 one, as the 0.07 wouldn’t have registered. And if your PSAs were all <0.1 prior to Jan 2021, you likely had some PSA creep well before that, which many folks like to know (and many others don’t).
Also, while the 0.2 threshold is the standard of care, there are many docs who treat well before that, depending on pathology, etc etc.
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u/ManuteBol_Rocks 2d ago
Your doc is wrong to say that. If you had a test that measured 0.07, there’s no way you could’ve gotten that reading unless your testing threshold was under 0.07, which rules out <0.1 as the threshold for that particular test in which you got the 0.07. You may have happened to change thresholds for that particular test and didn’t know it and had a test with a lower threshold.
The reason I ask all of these questions is that you had a great run with undetectable PSA at the <0.1 threshold. But, if you had been getting a lower threshold test all those years, it would be good to know if you had been 0.02 or 0.03 or something. One significant study shows that for those who went <0.01 after surgery and bounced back up to 0.03, all of those eventually had biochemical recurrence.
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u/mikestap11 2d ago
Apparently, the "<0.1" is a default output of the device used in the analysis.
Reference Range: < OR = 4.00 ng/mL
The total PSA value from this assay system is standardized against the WHO standard. The test result will be approximately 20% lower when compared to the equimolar-standardized total PSA (Beckman Coulter). Comparison of serial PSA results should be interpreted with this fact in mind.
This test was performed using the Siemens chemiluminescent method. Values obtained from different assay methods cannot be used interchangeably. PSA levels, regardless of value, should not be interpreted as absolute evidence of the presence or absence of disease.
My intent indiving down this rabbit hole was to try to answer your question. As for me, my doc answered it to my satisfaction and I fully comprehended the explanation.
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u/ManuteBol_Rocks 2d ago
Right, but there is no way you could’ve registered 0.07 based on that described assay. Something different was done when you got the 0.07.
In any event, I shall stop beating the dead horse.
Good luck to you during your upcoming treatments. And do look into getting a PSMA-PET scan before radiation as someone else suggested.
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u/OkCrew8849 2d ago
Agreed
It would be interesting to know when OP's PSA started increasing and one suspects it was not just two years ago. Standard' "PSA" obscures that.
FWIW, a very slow doubling rate.
(And that is separate and apart from certain levels that indicate treatment and certain detectably levels that are "considered" undetectable by various folks.)
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u/VermicelliOk5906 2d ago
Bien sûr d’ailleurs certains après opération sont à 0.04 et le resteront à vie…. Ce qui compte c’est la stabilité du taux…
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u/VermicelliOk5906 2d ago
Oui généralement toute hausse même mini va vers une récidive à plus ou moins long terme. En faite quand ton seuil de détection est <à 0.1 tu peux rester dans l’ignorance pendant des mois ou années. Maintenant avec des seuil jusqu’à 0.015… le doute dure peu de temps. Perso moi je suis < à 0.025 à 5 semaine de l’opération, mais je m’inquiète déjà pour la suite….
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u/ManuteBol_Rocks 2d ago
Yeah, you are in a good place for now though, and so am I. Got my next uPSA test in a week or two, so I’m experiencing the anxiety creeping in….
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u/Evening-Hedgehog3947 2d ago
Going through RT now. Was advised to take one gas each morning and night and citrucel each day. You might also make your last meal earlier than later. The nagging will actually focus on the full bladder.
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u/mikestap11 2d ago
I am actually more concned about the bladder discomfort. I've lost a lot of capacity over the years and feel urgency if I just think about water.
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u/Evening-Hedgehog3947 2d ago
Yes. Huge concern for me as I remain somewhat incontinent from the RALP. But hasn’t been the problem I thought. First of all, I hear a lot of men on here say they’ve been instructed to drink 32 ounces of liquid. I’m at a COE and my instructions have always been drink 16 ounces 20 minutes before treatment. So what I do, is drink 16 ounces during the 25 minute car ride, go to the bathroom and have a bowel movement if possible, and then down another 16 ounces starting 20 minutes before treatment. Haven’t been booted yet. Just remember they may pull you in early. Good luck. You’ll be fine. We all get through this.
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u/BernieCounter 2d ago
Interesting they emphasize the “empty” rectum. In a normal healthy person, the rectum normally does not contain significant feces, they are stored a bit higher in the descending colon. An enema would “rinse” out anything that is still in there and a bit higher.
On the other hand, during radiation treatment, there are all sorts of other things going on (irritation, swelling of tissues) so it may not be the “normal” empty situation.
“Most of the time the rectum is relatively empty. The colon stores stool higher up, and the rectum stays collapsed.”
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u/OppositePlatypus9910 2d ago
So things you can try. 1. Metamucil for regularity 2. I used to eat oatmeal at night. Eat 8 hours before the session so you have your bowel nice and empty 3. Dulcolex 4. Enema 5. Eat leads gassy foods ( the radiation time is the time to eat crappy food like pizzas, fries, and pastas- carbs are good during radiation, leafy veggies are not) Good luck
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u/rockledge_360 22h ago
Mornings. My treatments were at noon. Drank the prune juice in a smoothie at or before 9:00 am. Then the water. It was very helpful, enabling me to arrive as required.
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u/whoknowsiftrue 2d ago
Want a guaranteed shit at a specific time in the morning? Fleet enemas did the trick for me. Also, I normally eat a plant-based high-fiber vegetarian diet, along with Metamucil every day. But my radiation therapists wanted me to switch to a lower fiber diet (basically, the typical American diet) during my treatment, because excess gas/flatulence (which a high-fiber diet can produce) can alter the position of the prostate and potentially throw off the aim. My radiation oncologist recommended Cetrucel instead of Metamucil, because Cetrucel doesn't produce gas.
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u/Complete_Ad_4455 2d ago
For radiation prep I went low FODMAP to reduce gas, increased fiber and took Miralax, took Gas-X, took a short walk after dinner, took a 20-30 minute walk in the AM to help make sure of a proper BM or another one which is common for me. Emptied my bladder 45 mins before my appointment then loaded up with 16 oz water 35 mins before appointment. Tech’s were happy with my efforts. 30 in a row so far.
Biggest diet changes were lactose free milk and cottage cheese. No broccoli or cauliflower or onions or garlic or spicy or fried foods. Switched to real sourdough bread reducing the servings as well.
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u/rockledge_360 15h ago
It’s prune juice. Am not a big fan of, the taste is ok, and it works well for its intended purpose!
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u/iberezow 2d ago
I had a similar situation. 14 years post RALP, had a recurrence earlier this year. Went through 38 IMRT sessions which required empty rectum and full bladder. I started taking a half dose of Miralax the night before and would then drink about 32 ounces of water 30-45 minutes before the session. It worked pretty well. I only had one session where we had to postpone an hour to get some gas out and drink more fluids. I did have some stomach and gas issues from the radiation, but I would take Gas-X each night and then an hour before the treatment. Hopefully your body will adapt quickly to the routine. Wish you the best.