To briefly review, now 69 years old, had RP at Hopkins in Feb 2018. Gleason 4+5. Margins clear. Organ-confined. PSA undetectable for two years...then an ill-advised and reckless PSA holiday for three years until Aug 2023 when PSA measured in the range of 7. First PSMA that same month entirely negative.
Local urologist said the toothpaste is already out of the tube, so there's no point in radiating the prostate bed or otherwise rushing into treatment in the absence of indications of spread.
Hopkins RO disagreed...recommended the whole nine yards. Hopkins MO sort of came down in the middle saying a case could be made either way but enrolled me in a trial at the National Cancer Institute, which did a PSMA in December 2023. Returned negative except for a faint "nodularity" in the vicinity of the removed prostate.
Latest PSMA done yesterday at NCI shows no change from December. In fact, the single nodularity is even milder than before with SUV now in the 3 range. Meanwhile, PSA continues slow rise since January, now at 9.5.
I realize I'm on borrowed time but feel fine...no symptoms. NCI will do another PSMA in December. Holding off treatment until something alarming shows up on the scans. No illusions about what lies ahead but savoring every "normal" day while I can. I've had a very good and fortunate life. Kids all grown and successful with families of their own. It's all gravy at this point anyway.
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"Holding off treatment until something alarming shows up on the scans." That is a self-fulfilling prophecy. Incomprehensible to me why you don't have SRT.
The local urologist believed that with a PSA of 7, there was no point to the standard SRT/ADT combination as cancer cells were already in full circulation outside the prostate bed, and even though treatment would have the short-term effect of bringing down the PSA number, in the longer term I'd be back in the soup anyway...and meanwhile have to deal with the life-altering side effects of radiation and hormone therapy.
I also have some bowel issues that, though ordinarily manageable, complicate the SRT scenario.
The NCI team agreed with the URO's assessment.
The Hopkins RO said the prospects for SRT/ADT working in my situation were uncertain at best but provided the only chance of a cure...and therefore I should take it and go full bore.
The Hopkins MO agreed with the Hopkins RO on the cure calculus but offered the NCI trial as a reasonable option under the circumstances.
I guess the real "incomprehensibility" for most is that I wouldn't take any chance available, even if slim, for a cure...even more "incomprehensible" is that I would blow off three years worth of post-RP PSA tests.
The thing is, after what seemed like a highly successful operation performed by a world-class Hopkins surgeon, I was back to something approaching normal within a few months afterward. That included the physical relationship with my wife, which, even at my age, remains important to me. So after two years of undetectable PSA, I bailed...or maybe preferred not to know.
In any case, I eagerly bought into the nomograms, the ones where you plug in the various medical data...and they all described my prognosis as quite favorable.
And now here we are. My quality of life is currently excellent. It's been that way for six full years post-surgery, and I'd like it to stay like that for as long as possible.
In the end, we're all going to die...and the process will probably not be pleasant. I've had a wonderful and lucky life. Amazing wife...six kids, all now successful adults...31 grandkids. I'm much luckier than my Dad who died of colon cancer at the age of 41 and never got the chance to see his own children grow up and have families of their own.
Also, I happen to be a religious person who believes that nothing happens in this world outside the plan of God. As I see things, whether I live or die...and how I ultimately die...is not in the final analysis determined by my cancer.
I don't write this to convince you and am pretty sure you'll continue to find the whole thing "incomprehensible." You have lots of company...and that's OK.
Great site by the way. It's been a gold mine of valuable information.
nice way of looking at things. Perhaps an in between; whack-a-mole. no ADT, just occasional radiation to keep it at bay. If it is a slow growing variant.
I have a similar age and story (RP, Hopkins, religious, etc) and had PSA tests every 3 months. Once it started to move I went on the attack and had salvage radiation. I was surprised that the 5 days for 5 weeks radiation with ADT drug bothered me less then what I anticipated.
So 90 days after treatment and Orgovyx, I feel great and Testosterone came back from 10 to 600.
I agree with Tall_Allen. What do you have to lose? IMO, I am not going out of here without a fight, I will only go down swinging!
Well written explaining differences in medical opinions and approaches and the challenges we face with the beast. And, great attitude! Thank you!
With careful read I realize you have not asked any questions, nor for input. Perhaps simply an excellent share.
(I am compelled to share a bit). Despite my usPSA being very very low stable (0.03X range last three years), I remain on constant guard and continue with investigative efforts. These efforts include multiple types of imaging for comparisons; three PSMA's have been clear and it may be that my cancer is not PSMA avid. Also, I have annual blood biopsies for further investigation and insights. I am post RP, salvage RT, salvage ePLND, one year only on ADT.
You took a ‘Ill advised and reckless holiday’ and now you’re ’holding off on treatment until something alarming shows up on the scans’.
You are making the same mistake twice, yet your goal is ‘savoring every normal day’.
There are countless men on here who can assure you that days on treatment are far more ‘normal’ than in your imagination. Also many, many more of them. While the arc of medicine continues to shorten. Throwing that away is unwise.
After reading your longer post I see more clearly where you are coming from. It still makes no sense to me. You say the ‘process will not be pleasant’, but there’s no need to hasten it, or create a self fulfilling prophecy. Your head is now out of the sand, which is great news, but only if you take a good look, and lose the urologist for this purpose.
Thanks for weighing in. I don't think holding off treatment is the "same mistake"...and I don't think it's necessarily a mistake at all under the circumstances. In fact, neither the NCI team nor the URO think it's a mistake either. The Hopkins MO's view is a bit more ambiguous.
Now bailing on the PSAs, everyone is unanimous: that was a major mistake, the word "mistake" being a charitable description of the decision. But it can't be undone and has reset the equation. I'm starting treatment considerations at PSA 7 rather than 0.2 or lower.
Meanwhile, yes, "savoring every normal day" is a goal. I'm currently achieving it and will apparently continue to do so for the next six months at least. And who knows where in six months the "arc of medicine" might lead.
My prostate was treated but not removed. My PSA has crept up over the years, to 3.4. My urologist now has me on dutasteride (avodart) with a sprinkle of anastrazole (arimadex) thrown in to combat gynecomastia. Finasteride caused me problems, so switched to dutasteride. I consider this approach 'ADT lite'. I remain functional. My PET scans have remained clear despite the rising PSA and a recent prostate MRI was also clear. I am 74. I think something besides prostate cancer will get me but I will remain vigilant and I will do my best to follow doctor's recommendations. Good luck with your health.
Thanks for sharing your experience. My husband had RP in Dec 2021 and has gotten PSA tests every 3 months. I'm curious when you decided not to get PSA tests for 3 years, did your wife or children wonder why or asked any questions?
My wife told me I should, but I didn't. That's on me, not her. My kids have been busy with their own lives and large families of their own. They asked questions but since childhood have been used to Dad doing the right thing. Not this time.
One of our daughters is a Poor Clare cloistered nun. All of us visited her earlier today. We only get two family visits a year. She and all the sisters at the monastery are praying for me. That's a great comfort.
66 years old. RP in 2011. BCA 3 years later with radiation from Hopkins to the Prostate Bed. Back to undetectable for 3 years and then another BCR. Had PSMA at NIH; found a Pelvic Node with PCa and again had radiation at Hopkins to the entire Pelvic area. This was followed by 2 years of Lupron. Undetectable for the last 4 years and with the help of Testosterone replacement therapy I and having relations with my wife. They now tell me that I have only a 4% chance of dying from PC.My Gleason was 4+3 so I started off better than you but I was determined to go down swinging.
It hasn't been all sunshine and butterflies with the incontinence and some time off from sex but in the end I am happy now and so is my wife and daughter.
Hello sir and cheers to you on being blessed with a loving wife and a large family, few are so lucky and you are truly blessed. My name is Nelson, Im 55, was diagnosed last october 2023 with gleason 9 (after a painful biopsy),high grade PCa. Due to contacts I had at U of Miami, I went quickly through the system and received radical prostatectomy in November. PSMA SCAN PRE SURGERY showed no spread and confined disease. In retrospect I should have opted for radiation but such is life and with my personality It would have been difficult to "not remove cancer immediately"...day after surgery surgeon came in with a huge smile on his face telling me surgery was a success, "couldnt hope for a better outcome" and "we expect a clean pathology". Several weeks later I reveive final pathology confirming gleason 9, extra prostatic extension as well as a postive margin. Ouch. This was my realization of things to come. On a good note I had pelvic node removal and seminal vesicle removal and those came back negative, if removing more body parts can be considered "good "of course. Seven months later I have/had remained undetectable, have regained about 98% of urinary function(thank God) but still zero sexual function. Most of medical team involved were pretty positive about sexual function return in 6 months, except for one NP who was as I know realize the most realistic of the bunch, although Ill admit my medical team has been first class. I test PSA monthly and yesterday my PSA came back at 0.04 with no undetectable sign next to it and my heart dropped, hence its 430 AM and cant sleep and Im online looking for PC related info , again,for only God knows what purpose, maybe to vent... I will now test again in a couple of weeks to see if its a false reading or the beginning of another journey and recurrence. I pray its the former. With my pathology I knew things could be complicated but even though I struggle mentally, I do ultimately know whatever happens is Gods will. I tell you this boring story because reading your posts and some replies , I can understand why you took a "holiday", and frankly respect you for it. You lived three good yrs , laughed , and spent time with your family without the quarterly reminder that this insidious disease is constantly trying to take your manhood , your prace and your life. We all want to live longer but average age of men these days dying from other causes is 74 and if one can get close to that and lived a good life then you won and cancer lost. My germline testing was negative, my decipher test "low risk" , Achieved undetectable state after surgery which is a good prognostic indicator, no evidence of spread, and still not a day goes by that I am not reminded that I live with PCa and the possibility of recurrence. In the end I do thank God that I still have time with my daughter who is in her thirties and my dog who I would never want to leave behind if something happened to me. Im not the same man I was before this surgery not will I ever be but I lived a healthy 54 yrs on this Earth , had some fantastic moments which is more than a lot of people, and for that Im grateful. I will do my best moving forward to stay healthy, excercise and diet accordingly, and stay strong in my faith as it is the only thing I can control, the rest is up to God. I applaud you for choosing to live for a while after surgery and not be a slave as I am to this situation, and I hope that moving forward God cures you and gives you many more yrs with your loved ones , and that whatever treatment path you choose you dont regret those three years that you were free, they were a gift. Godspeed on your journey and God bless. Nelson
Nelson, thank you for sharing that and for your kind words.
I don't see you as a "slave" to anything nor do I think your worries and course of action are unreasonable. Just the opposite.
0.04 is still pretty darn low. I mean, some docs don't pull the trigger on follow-on treatment until 0.2...or even 0.4...though the standard thinking now appears to be the earlier the better.
In any event, much too soon to panic. And bigger picture, your mindset is right. Let's pray for one another!
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