I was diagnosed initially 2 years ago as Stage 4 with mets to the bones. Low volume. Gleason 8-9, PSA less than 2 from the onset. I had radiation to the prostate only. After 2 years of Lupron/Zytiga, everything has shrunk or disappeared via PSMA PET. Everything has been good,(but with med side-effects) but with no measureable testosterone or PSA.
My 2nd opinion doctors at MSK now say that based upon my PSMA PET scans and initial CT/bone scans that they don't think I was metastatic from the onset. They believe it was to the prostate and made it only to the pelvic lymph nodes. They are now recommending radiation to to the pelvic lymph nodes and region to potentially eradicate all cancer.
My primary Oncologist suggests I could still have microscopic cancer and it may not be a cure especially if the bone mets are really there. I would like to get off the meds due to side effects but am I taking chances with more serious side effects with the pelvic radiation?
Basically a chance for a cure vs risk. Anyone else face this decision?
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groth12345
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I can see I didn't explain that well enough. I'll try again.
"Cure" is not a medical term for prostate cancer. It is a term patients, like myself, and some doctors, use to describe a cancer that has been eradicated convincingly and shows no signs of ever returning.
"Biochemical No Evidence of Disease (bNED)" is a medical research term. It is used to describe patients, who in the study period have not evinced any PSA that might indicate PCa. "No Evidence of Disease (NED)" includes both PSA and imaging.
For men with localized PCa who get potentially curative treatment, like myself or anyone getting whole-gland radiation, prostatectomy or both, medical researchers look for "Biochemical Recurrence-Free Survival (bRFS)." That means that after treatment, PSA has not exceeded some pre-defined level.
The longest-running medical research on potentially curative treatment is 25 years. You can read about the llongest-running ones and the issues involved with long-running trials here::
In reality, all PCa guys face the same question.... " chance for a cure vs risks( of early life-altering side effects) " Top PCa researchers are doing extensive work to try to help men havea better picture of where each man falls in this reward vs risk equation!!
From what I've been told, pelvic radiation can be mapped to cause as little damage as possible to surrounding tissue. However, I understand that in remote cases, there might be side effects. I didn't have anything serious from the prostate radiation.
Actually I am currently enrolled in a Phase I Clinical Trial in the Dana Farber Cancer Institute that will evaluate the ability of using inter-treatment MRI while getting SBRT to a couple of pelvic lymph nodes and possibly the abdominal wall (PSMA-positive) to tightly define the radiation beam(s) to minimize collateral damage to other structures. One node is very close to my bladder, and one idea is to minimize any radiation to the bladder wall. They are using very high dose fractions for less treatments, (Three for one large node, and one only to a second node) and testing the immediate and long-term side effects, any treatment damage, and PSA/cancer growth/control.
So far, my PSA has dropped from 1.14 down to 0.20 in the first follow-up. Next is late Sept. Side effects, to date anyway, have been great fatigue immediately after treatment, now pretty much resolved; urine retention - have to work hard to get it out, and getting a bit worse I think. I know I can ask for Flowmax, but I believe that comes with other side effects possibly, so I am stubbornly holding off for now.
Hopefully, those two lymph nodes are toast, and no other pop-up right away!
My treatment was/is "with curative intent", I was Dx2020 G4+3 =7 N1M0 PSA 17 or 19..not sure. Anyway I had 39 fractions of EBRT and 2 years of LUCRIN only...that was SOC at the time. PSA was undetectable throughout HT. Had my final HT injection June 2022.
March 2023 PSA <0.01 T =8 mol/L on a (Ref: range 10-35)
Sept 2023 PSA 0.08 T=18
Next Test March 2024
I'm still holding out for a cure, it is an emotional rollercoaster waiting on results and thinking will the cancer have spread by the next test versus waiting to see will it stabilise with no evidence of disease. I can't give you an answer to your predicament, but for me its the chance of a cure and a normal life that I believe I must take. They ,MO/RO, must see how my cancer reacts with no medication before they intervene .
It sounds like you could be cured. Hope that's the case for you and anyone else going for it. The ADT meds are hard for me to live with. 2 years is enough unless I have to continue (assuming the radiation doesn't work).
I highly recommend you review the PCRI video from the recent patient conference, day 1 - advanced disease. Dr Mark Scholz talks about treatment and cure (!) for metastatic prostate cancer and a paper he will be publishing on “miracles”. The entire two days is well worth listening to.
My husband had proton done on his prostate and 1 lymph node. He was G9. That was a year ago and his side effects were minimal. He will be on adt and lupron for 2 full years
Agreed, though anecdotally have heard more horror stories about RP than RT but then horror stories are more often related than succuss stories I suspect.
I’m not too dissimilar to you. I had one bone met but had whole pelvic radiation at the outset. My PSA was only 3.6. Can I ask whether you had PSMA PET initially to identify the bone mets and, if so, why your oncologist now thinks they were false positive? I had bone scan, Psma PET and also an MRI to look at my one met.
Whole pelvic radiation is no joke. Treatment itself is not bad but longer term effects are a challenge. My second opinion also said there was a good chance of a cure but I’m waiting to see how things turn out.
I've had 4 PSMA PET scans over the past 2 years. It was first diagnosed as Stage 4 with about 4 rib mets. Very low volume. My MSK second opinion now thinks that they were not mets due to the response to ADT. Indeterminate. So now recommends pelvic radiation. Most say I can tolerate it well. It sounds like you have some longer term effects. I would like to avoid that it I can. Also looking into proton radiation.
I had the pelvic area done as a precaution to eliminate microscopic cancer cells when getting 25 doses of radiation to the prostrate. I was no spread and Gleason 7 (4+3). During the treatment I had diarrhea for about a week and that is now gone. No other side effects.
I will know more in January 2024 when I get my first PSA and T tests after being off Lupron for 2 months. Right now I am not measuring any of these in my 3 month check up.
My thinking was to go for a cure and hopefully not have to deal with any of this again. Wishful thinking? I have always been a “glass half full kind of guy”. Changed my diet, lost 13 pounds and added an exercise program of daily weight training for 30 minutes each day and walking in the forest behind my house.
I bought an Apple Watch to track my steps/distance and have been doing around 5.6 to 6.5 miles and that gives me about 13,000 to 16,000 steps. My dogs love it and they have really built muscle.
That has been my pelvic radiation experience and I was getting it done at a local regional hospital with a newly minted RO. Hope this helps.
I elected for whole pelvic radiation. Long term side effects of radiation are indeed possible. The side effects of metastatic prostate cancer are… somewhat longer.
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.
If this post does NOT apply to your question..........you get a full refund from my ex-wife....
It's been 8 months since getting off Zytiga/Prednisone and 6 months since last effects from Lupron. Testosterone finally started going back up after 6 months rising from 0 to 63 and now 136 month to month. PSA staying at <0.02. PET scan at 8 months showed no active cancer. Hoping it stays that way as testosterone recovers.
So far so good after initially being potentially mis-diagnosed with a few tiny mets (Stage 4).
After prostate radiation in 2022 and pelvic radiation in 2023 I stopped Lupron/Zytiga on early 2024 (2.5 years ADT). Testosterone started coming back gradually from essentially zero to currently 223. Took about 6 months. PSA has been 0.02 (not measurable) until now. Just went up to 0.05. Doctor says it will go up since I still have a prostate. Thinks it could go up as high as 2.0 range before leveling off. This assumes that no cancer remains.
Does anyone have experience with their PSA increase after ADT hoping for a possible cure?
Hi Steve, I just have a quick question. Were the tiny spots on the ribs found by PSMA Pet initially? And if they fully resolved after starting doublet therapy, I thought that to mean they were prostate cancer cells since there was a rapid response? My husband had a bio recurrence in some small abdominal lymph nodes, so we incorporated those into the IMRT plan and started doublet therapy (Lupron/AbiPred) for 8 weeks prior to starting the IMRT. The radiation oncologist at Yale said he knew before starting the radiation that he was in fact dealing with pca mets because the nodes were melting away from the ADT , and he could visualize that on the corresponding ct scan. We were told ADT would not shrink them unless they were pca. I am very interested in your case, and it gives me hope. I pray you never have further evidence of disease.🙏
The PSMA PET did reveal about 5 very small mets initially. I then had 2+ years of Lupron/Zytiga and they shrunk a bit along with the prostate and a few even seemed to disappear. However, my second opinion MO (MSK - Dr. Michael Morris) thought that they may not have been mets in the first place which is why he suggested pelvic radiation since there was evidence of cancer in the regional lymph nodes. The PSMA PET is not 100% accurate and may show false positives especially for such small spots. They could have been from injuries or whatever.
I'm just trying for a cure by going on vacation from ADT to see if the PSA rises beyond acceptable limits (1-2 range). If so, I'll be going back on ADT.
Awesome……you have a lot in common with my husband. We are on the same therapy paradigm as you. We are being treated at Yale by a fantastic oncologist, Joseph Kim, but we also travel to MSK for consults. Our oncologist there, Min Teo, is moving on, and it would be amazing to get into Michael Morris if anything changes. Thanks for explaining your situation.
Yes I have had PSA increase having finished 24 months of Lupron, however the most recent Result shows a drop in PSA even with a corresponding increase in Testosterone!! BTW I still have a prostate.
March 2023 PSA <0.01 T =8 mol/L on a (Ref: range 10-35)
Sept 2023 PSA 0.08 T=18
March 2024 PSA =0.12 T=18 mol/L
May 2024 PSA = 0.22 No T test results
July 2024 PSA = 0.19 T = 26 I felt as if I won the lottery, even though it's just one good result out of 5
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