62 when had RP, Gleason 9, not clean margins. Non detectable PSA for 3.5 years, then rose to .17. Bio chemical reoccurance 2022, 32 sessions of IMRT and Lupron for 6 months, then check up in June 2023, PSA non detectable.Went to plant based diet, with salmon and other fish 3 -4 times a week. Feel best I have since my early 20's (67 now).
Supplements from Ulta Botanical (Curcumin, Quercetin,Berberine, Fisetin, EGCG, Beta Glucans, Ivermectin and Fenbendaozle, with Milk Thistle). I know, I know, but why not, no adverse affects as long as Liver and Kidney functions monitored, so far, good. And RO and MO both ok with the supplements.
Run 12 miles a week, lifting weights 3 x a week.
Problems during radiation treatments with gas and not empty bowels, tried low gas diet but still issues, used enemas in hospital RO office about 12 times, ran the stairs, usually finally got bowels clean enough, but 3 times sent home without treatment.
No side affects I could tell during radiation or afterwards, just research low gas diets , don't eat after 5 or 6 night before treatment, drink enough to have full bladder for treatment. You can do this. Fast if needed.
Just "Grit" your teeth, and do whatever it takes to get thru the treatments! Honestly, for me, worse part was the times I had to do enemas because my bowels weren't completely empty.
You have this, you can do it, don't even think of quitting part way thru, it will go fast, most effective if you complete the whole course, you don't want to quit before scheduled and leave the strongest cancer cells still alive!
The rest of the radiation treatments were very tolerable for me, no issues afterwards that I know of, 15 months post radiation treatments now.
Thanks for the reply Ricky. Got frustrated cause my PSA went down to .24 after using Tumeric for 2 straight mnths...then increased back again. It was one of those wtf moments.
Is Lupron the Hormone therapy? I declined HT , didnt want to put nething else in my body. I do fast one day a week. No food for 22 hrs. which would put me in autophagy stage. Thought this would help.
I try to eat a healthy diet. No fried foods. Limit sugars, but hell everything has sugar these days.
Im surprised IMRT was recommended as anything under .20 is not visible under Petscan.
Im glad to hear youre doing well, makes me feel better. Again thanks for the info
Yes, My Radiatiion Onocolgist at OSHU in Ptld Ore is fantastic, nothing showed up on the PSMA pet scan, but they said I definitely had bio chemical reoccurance, and some studies show the sooner you hit it, the better chances for a complete remission. 6 months of Lupron, for me, the hot flashes were the main side affect, and just toughed it out thru them, was actually no big deal. Hoping you have success like I have, so far!
DDid you and/or your Docs identify a reason that you had such problems with gas and bowel movements.? I struggle with trapped gas constantly...for some reason, natural passage of gas is impossible usually, successful only plopped down on the toilet and strain/push.....which tends to cause a problem with my umbilical hernia...OMG !! I use Miralax daily to maintain fairly regular sufficiently soft bowel movement. A colonoscopy found nothing but "minor" internal and external hemorrhoids .
maley2711 wrote -- " ... I use Miralax daily to maintain fairly regular sufficiently soft bowel movement ... "
Simply a suggestion that has worked for many I have mentioned this to and even had some head scratching from physicians who never gave it a thought --
Purchase a bottle of magnesium citrate <$2.00, shake it up, either 1 - pour some in a small finger mister and spray on the inside of wrists and inside of elbows and rub in, can also spray on hands and rub on earlobes -- this action BYPASSES internal absorption and goes directly into blood stream as does a Transdermal patch resulting in free flowing bowel movements NOTE - TOO MUCH mag/cit makes for very watery movement so experiment or 2 - simply moisten fingers with mag/cit and rub on previously mentioned areas PLUS I also rub some on the back of my knees.
NOTE - I am not a doctor so only a suggestion that reduces cost of materials AND is much - MUCH EASIER on internal organs
We never did figure out the root cause of my "gas" and not clear "intestines " issues, took care of most of them with enema in office bathroom, a humbling experience, but you do what you gotta do! (Doo?)The last 3 or 4 sessions were delayed, while they "re-mapped" my insides to compensate for my intestines moving into the field of radiation,mstill confused about that?
This totally " freaked" me out, so worried that would interrupt the killing affect on the nasty cancer cells!
But they assured me, no affect, would be just as effective, and once they radiated on the new map of my internals, the last 3 radiation session's were no problem.
I'm going through RT now. It's a tricky balancing act getting reduced gas, consistent bowel movements in the morning and little mass in the rectum. I'm on a diet of oats for breakfast, wholemeal bread and a small salad for lunch and fairly innocuous evening meal of pasta or rice with a sauce, plus blueberries, some nuts and Greek Yoghurt. It's working for me 🤞!
I had RP in 2019 at 69. I did not have clean margins and 3 lymph nodes were positive. After I had 20 months of negligible PSA and then I saw a slow rise. .08, .20, .42. At .42 I had a PSMA scan before FDA approval on my dime; but it showed nothing. Then I had 29 salvage radiation treatments without any problems. I did have ADT at same time and so 6 months of Lupron. I have not had any problem after surgery with incontinence and so having to have a full bladder before each radiation treatment was not a problem. That was not true for other guys being treated. If you have to urinate before they take you in, then you have to start drinking water to get the bladder full. As to bowels, I am pretty regular, but they had me take Miralax and GasX as a prevention to constipation and gas. It worked for me and I had all 39 treatments with no problem, and luckily no side effects. PSA remained negligible after that until May 2023 and it went to .08. Most recent PSA in February showed .22 and I am now back on Lupron for next six months. We will see what happens six months or so after my next shot in May? The only thing that I have left from the radiation is a bald spot in my pubic hair, but I can certainly live with that 😃
I had salvage radiation in 2021 because of a rise in PSA from negligible after the prostatectomy. I did not have the radiation because of the three positive nodes. I know some are given radiation as preventative of a recurrence but that was never suggested to me.
Yes, the Dr sd the scan showed a bright color, but it could also be due to urine which is close to the urethra and urine shows up as a bright color on the scan
2 - usPSA 0.11 before salvage RT; 0.075 nadir after RT
3 - 39 sessions, 70.2 Gy to prostate bed
4 - no did not check usPSA prior to finishing radiation
5 - yes finished full number of sessions
6 - n/a
7 - ureter strictures are only side effect and this is permanent
8 - no meds prior and no meds currently nor planned at this time
Additional feedback: I did not do imaging prior to salvage RT. If I had a do-over, prior to salvage RT I would have PSMA and either choline or fluciclovine scans for comparison. And even better, I would travel to Europe for Ferrotran nanoparticle MRI (I did this after my salvage RT, in 2018). I would also have blood biopsy (I appreciate some disagree with this). I would also consider salvage extended pelvic lymph node surgery first - I had this after my salvage RT. I hope this helps, all the best.
I do take Tumeric and other phytochemical supplements to theoretically combat cancer stem cells, but at very low usPSA level, 0.03X range. I also maintain good Vit D level and very low ferritin levels. I DNK if these are helping and I am aware of some concerns for the use of these supplements.
Salvage RT was to the prostate bed only as we were thinking (blinding hoping) my cancer had not spread any further at (just) 0.11. Without imaging confirming mets in greater pelvic region I was not willing to risk side effects. Imaging was not done because docs felt neither the choline nor the fluciclovine would identify any mets at 0.11 and I did not quality for US PSMA trails at that time in 2016. Also, at that time I was not aware PSMA imaging was readily available in Europe, nor did I know about the even better Ferrotran nanoparticle MRI; had I know I would have traveled for them.
The only symptom with the ureter stricture has occurred twice now; twice a 1mm kidney stone has been trapped. Note, it is possible this is from RP and salvage ePLND as well - three invasive treatments to 'region'.
When they did the simulation yesterday , 4 small tatoos were placed, one under my belly button, one further down my belly button and two on each side of my hips. Im hoping that covers more than just the pelvic bed. Sorry to hear bout the kidney stones, but sounds like other than that youre doing well. Hopefully it continues that way for a very long time. Thnks for the feedback.
Yes thank you doing very well and most grateful having had RP, salvage RT, salvage extended pelvic lymph node surgery and one year on bicalutamide for added insurance. Been six years since ePLND and five years since ending bical. usPSA has ticked up but holding 0.03X range last two years. No unmanageable side-effects. All the best to you and all of us!
Did you have stricture? If so, what did you do? You have named my #1 fear when contemplating RT of any sort.....of course I believe brachy introduces the most risk for stricture. Stricture worse than incontienence?
I had Proton and 3D conformal in 2009, no problems until two years ago, VA found kidney stones and a bloated left kidney, several kidney stone operations later I ended up with both urethers bad. Had surgery at UCSD to cut them, shorten them up and reimplant them, had bladder bleeding with the stents, three emergency room visits, had 30 HBOT treatments. At this time I am so so, get up to pee about every two hours at night, don't pee all that well during the day, still have at least one stone, going for ultra sound in May. I can't complain, I can walk my dog every day and do most things, lots of anxiety about what if bladder starts bleeding , which it hasn't since stent removal in almnost two years but I'm a professional worrier. Don't know if I'd do anything different. I'm almost 80 and still moving. Also have Lymphoma that at this point is quiet. Vietnam 1969/70, agent orange probably caused most of my problems.
When I selected RP over brachy and other methods as well, I of course feared incontinence. Fortunately I have no unmanageable urinary issues. As mentioned my two stones 'were only' 1mm and I am told these would pass, perhaps unnoticed, if not for strictures. The only thing that has been done is the removal of my first stone required a stent for Lithotripsy. For my second one, just recently, tried Flomax first and the stone quickly passed.
My IMRT radiation was initial, not salvage. But like you, I declined hormone therapy. After two years, that choice probably let the cancer spread to pelvic nodes, for which I had more IMRT. The radiations caused no side effects. I began ADT with Orgovyx in December, also with no side effects. My biggest mistake was not doing ADT from the beginning.
Two years after radiation, PSA rose slowly from 0.93, then doubled from 2.39 to 4.79 in 3 months, after which a scan showed cancer remained in prostate and spread to one node. Had that node radiated. PSA dropped to 2.95 but then rose to 3.78 in 3 months, after which a scan showed spread to a second distant node. Have been on no diet. Have not been on ADT until now, three years after diagnosis.
I had an RP in 2019 and went through salvage RT to the prostate bed Dec '22/ Jan '23 at 62, 33 sessions/66gy total. No lingering effects thus far, but a few bouts of bloody urine about 4 months after that cleared up quickly. I also had 6 months of Lupron starting about 2 months prior. My PSA prior to starting was 0.12, and was checked in the middle of the sessions (<0.01) along with my testosterone (23). Unfortunately my PSA starting rising again as my testosterone rebounded 7-8 months later. PSA was 0.11 in January and I opted for a PSMA scan last month and luckily found an inner iliac node, so this time I'm on Lupron / Zytiga and starting whole pelvic radiation next month.
You may be interested in reading the new Salvage Therapy for Prostate Cancer: AUA/ASTRO/SUO Guideline (2024) regarding your hesitancy with ADT : auanet.org/guidelines-and-q...
3) 20 (hypofractionated dosing) to both prostate bed and pelvic lymph nodes
4) No
5) Yes
6) Main problem during treatment was holding bladder during sessions-not always successful
7) ED became worse and urinary stream weaker
8) Meds: off label atorvastatin, metformin
Supplements: curcumin, quercetin, beberine, sulforaphane, bioperine,garlic, ASA,melatonin,Vitamin D and others at times
Other: PSMA scan negative at start of radiation treatment.
I took 4 months lupron, casodex, avodart with start of Rad. Rx. I did the pelvic lymph node radiation and HT because of high risk profile (PSA 30 prior to RP 2019, gleason 9, and decipher score .81). See Spport study. I plan on taking avodart for 2yrs post radiation.
I try to avoid/limit meat, processed food, and dairy.
For breakfast cooked mix of (groat, sorghum, purple barley grains). Top that with frozen mixed berries (blueberry, blackberry, raspberry), 1/2 diced apple, 1/4 avocado, sprinkled with walnut pieces and 3 tablespoons greek or almond milk yogurt. This I have for almost all my morning meals. I cook up the grains in rice cooker and normally have enough for 6-7 servings
For lunch (what I call "God's chemotherapy" )
Smoothie: Baggies made up ahead of time normally enough for 14-16 of servings and frozen
Mix sandwich bags with frozen (broccoli, cauliflower, 1 TSP pomegranate seeds, brussel sprouts, knuckle of ginger.) 1/2 cup frozen berries, 1/4 avocado. Nuts: walnuts, almonds, one brazil nut, 2 TSP ground flaxseed, 1 tsp yellow mustard powder, 1 tsp dried parsley, 1 tsp dark chocolate, 1 tsp alma powder, scoop of chocolate flavored protein powder. Then add almond milk and green tea. This I blend and drink for "most" lunches. Believe it or not this taste pretty good.
Dinners have been quite varied: fish, plant protein pasta with roasted garlic pasta sauce, and salads with meals and sometime alone. I bet I have meat or go out to eat at least once/week.
Initially doing time restricted feeding but not now. Try to do a 2 day fast about once every 3-4 months.
My age at the time was: 68 + years old (Fried during Feb. March and April 2005).
Greetings: Radiation - I've posted this before so to those people who have already seen this please forgive me.
I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.
Since I dont have a prostate due to RP, the gel doesnt apply to me. What do you mean by 15% and 80%? Were you taking any supplements or chg ur diet after Salvage Radiation?
Hello Drago, I am not a doctor even though I played one with my next door girlfriend Joannie when I was 6 years old....So I would think you still may need a gel to protect other critical parts in the area down below. Ask around..... Also no supps or diet change..... It just is what it is......... 15 and 85............Hope all works out for you and is harmless.....
Yes I eat what I want....... I've been doing from the age when Joannie and I showed each other, our others......Joannie is probably in a nursing home now showing her other to others...... Keep fighting the beast or he may be eating all he wants.......
Summer of 2018 diagnosed, Gleason 9 (59 years old) / RP in February 2019 (Happy Birthday!) They also repaired 2 hernias / Stage 3aPN1 / No treatment, PSA undetectable until December 2021 / PET Scan found 1 spot in pelvic area (Jan 2022) / Started ADT in March 2022, Radiation therapy May & June 2022 (63 years old) / Coming off ADT in May 2024. Throughout had only mild side effects - a mild hot flash & a bit of fatigue, some weight gain (thank you Prednisone). ---- No incontinence issues, no gas issues - during radiation reduced fiber intake and limited particular foods as per recommendation of doctor. Once treatment done, slowly brought fiber back up and added prebiotics for 1 month to help rebuild gut bacteria. Walk over 6 miles a day, eat a Mediterranean diet, follow Blue Zones lifestyle - Still no issues and PSA undetectable. ---- Blood tests throughout show only a bit of issue with Protein level (all my life) & bouncing a bit in and out of anemia (again lifetime issue). Liver & Kidney tests are phenomenal and I attribute much to exercise/activity & diet. Supplements: multivitamin for men 50+, magnesium, vitamin D. I track my eating pattern and nutrient intake.
Thanks Chef, I forgot to ask on my orig question if anyone chg thier diet. Thnks for proving that info. and Bday wish. I thought you need to add fiber while on treatment to deal with emptying stool
2 PSA before and after Radiation - 0.20 before, undetectable after for 7.5 years
3 Number of radiation sessions - about 37
4 Did you check ur PSA prior to finishing radiation? - no
5 Did you finish full number of sessions? - yes
6 If not what prompted you to discontinue sessions
7 Any side effects still lingering - very slight weakening of anal sphincter but have used pads only as a precaution and only a handful of times when doing physical workouts without access to a bathroom - well worth the 7.5 years of undetectable PSA without any ADT
8 Were you on any meds prior or currently now? - no - standard of care back in 2007 did not include ADT during salvage radiation
It looks like you had good success with your surgery, which bodes well for success with salvage radiation. If I was in your shoes, I'd get a PSMA scan. As long as you're going to have radiation, the radiation oncologist can radiate any visible tumors outside the local area while also radiating the local area.
more accurately, it’s probably rectum rather than the sphincter. And it’s nowhere near as bad as it sounds. Just can’t delay defecation as long as before when the urge arises.
I had salvage radiation after surgery when my PSA went up to .24 a year later, I had 36 sessions and the fatigue was brutal. The PSA started climbing again a year later and I had radiation on the 2 Mets that showed up on the PET scan, I’m on ADT( Eligard) and Erleada. I’m now 67 and all this crap started Jan 2020. My PSA in now <.01. The side effects are always undersold by the Drs. Knowledge is power.
My incontinence got worse for 10-12 months, the fatigue wasn’t that bad as long as you kept active , 12-15000 steps a day. Now I have brain fog from the ADT, and I’m at a pad a day. I usually have beers on Friday nights, but I have to drink slower or my bladder gets drunk and then it’s a shit show. It’s not hard to live with, it’s just how it is. You get used to it. Good luck.
I had a RP in 2012 at 62 yrs old, G7 confined, PSA 7.5. PSA started creeping up in 2017 and I had SRT in June 2018 at PSA .22 (approx 40 sessions, 68GY, no ADT) . PSA was at .11, 1 month after treatments and nadir was .05, 6 months after treatment. No sides from treatment at the time. Two years later I had a urethral stricture which was corrected with surgery (urethrotomy followed by a catheter for 10 days). My PSA is slowly rising again. I had a Pylarify pet scan at .4 (May of 23) which was negative. My PSA is now at .6 and I expect to have another scan this summer. I hoped this helped...Good Luck !
Thanks for your concerns. I don't know (like the rest of our "brotherhood") what the future holds but I know I am very grateful for the run I've had while so many others have not been so fortunate. To answer you question the only "supplement" I take is I've drank 8 oz of pomegranate juice every day for the last 8 years. I do this based on a study I read done at UCLA years ago and I have absolutely no idea if it has actually helped a damn bit but it supposedly has lots of other health benefits so I don't think I'm hurting anything. LOL Once again best of luck to you.....
I, like you, had RP in 2015 at age 61 but I recurred in 2021. Spent a year following the PSA with very low numbers but it finally got to 0.23. At that point did PMSA scan which we decided was negative but there was a questionable rib lesion. Went on Lupron and abiraterone. Then got radiation. PSA went to zero on medications before radiation started. I got 28 sessions. During radiation therapy I had a lot of gas but otherwise did well. A nutritionist suggested an app that predicted the likelihood any food would create gas which helped a lot. I am a very active guy and 3 months after radiation therapy I got a sacral insufficiency fracture on a day where I played 5 hours of pickelball. That healed in 3 months. I continues abiraterone and Lupron for 2 years. I have recently stopped all meds to see if I was cured.,
I was 69 and had Psa persistence after RP. It was 1.7. I had 33 RT sessions and was given an Eligard shot and 30 days of Casodex before starting. I finished all my sessions. It’s been 3 years now and the only really noticeable side effect is really impressive flatulence if I overdo fiber. No problems getting my bladder full for the treatments but they want empty bowels. Did the walk of shame from the treatment room to the bathroom a few times until the nurse turned me on to Metamucil. I’m as regular as a Swiss watch so that really bummed me out but they want you completely empty. The Metamucil really helped to clean me out. A year or so after RT I developed hemorrhagic radiation cystitis and that turned into urinary retention. What followed was catheters, cystoscopies, bladder cauterization. That seemed to take care of things but I’ll occasionally see a little blood if I overdo things like shovelling snow or lifting something really heavy. I’m still on HT and probably will be for life. My Psa is undetectable on the standard test and my scans are clear. Don’t let my experience turn you off. A lot of guys breeze through the RT. I didn’t have any issues at all until a year after I was done. No fatigue or anything. It was like nothing happened. No incontinence issues other than right after the RP and that was done in 3 months. So, as the saying goes, so far so good.
Neither the RO or MO thought they could cure me. My MO thinks staying the course is my best bet for a longer life. My dad died of PC. Truth is neither of them know how things will shake out but they are the ones with the medical degrees so I follow their advice. No special diets but the RO warned me about the gas. It wasn’t bad until after the treatments were finished and fiber helps with the required bowel emptying so it was a non event for me during treatment. I still eat a lot of fiber to keep things working well. Just not if I’m going to a friends house for supper 🤭.
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