I have been a reader and sometime participant on this forum for a few years now, but while I’ve referenced my situation occasionally I haven’t posted a bio and don’t think I’ve detailed my history much in general.
I got a private message today from a member that got me thinking I should do this. This gentleman states in the message that he sees I’ve been in remission for two years. I see it more like 8 months, but no doubt I’ve done well so far despite the residue of the treatment ordeal-so here you go. This may be particularly helpful to any man making a decision about oligometastatic pca.
Background: diagnosed in March 2019 by local urologist near my home in Washington DC. PSA 15. Bid him farewell immediately and headed to Johns Hopkins where I met with another urologist.
There I got a MRI guided biopsy (which my insurance wouldn’t pay for so paid out of pocket) showing mostly 80-100% cores of predominantly 4+3 with a few 3+4 also. The MRI showed a substantial lesion in the half of the gland that had positive cores.
I then met with a very well regarded urologic surgeon there who did not attempt to sell me on RP but did say that surgery after radiation was generally problematic and that surgery would reveal info in the pathology report that couldn’t be obtained otherwise. At that time (early 2019) here in the US that was evidently correct.
My post op pathology showed seminal vesicle invasion and one positive lymph node out of 15 sampled. Nerves were supposedly spared and margins negative.
Based on this less than stellar outcome I was referred to a MO, again at Hopkins, who offered me 3 choices: Do nothing and die of metastatic cancer in 10 years, take SOC with adjuvant IMRT radiation plus 2 years ADT and have a 50% chance of cure/total remission in 10 years, the other 50% I would be alive but fighting it.
The 3rd choice was a clinical trial of the IMRT plus ADT accompanied by 4 cycles of concurrent Taxotere chemo and Zytiga for 3 months. He said this would give me a better than 50% chance at the aforementioned remission in 10 years but could not say how much better at all.
Still, when I asked if he really believed that he said absolutely so I trusted him and signed up.
The Lupron, the chemo, the dexamethasone, the IMRT, the Zytiga yes I guess it was a load in retrospect, but I knew what I had to do in order to do well with it. I have a great marriage, good friends and family, mostly great diet, spiritual life, work I love. In addition of course (as anyone who has read any of my replies on here knows) a lot of exercise.
I walked and ran, but the pandemic closed my gym and weights were impossible to find, so I took to calisthenics seriously and it worked out well, although some sarcopenia no doubt took hold. Dexa scans bore this out.
At 1 Year I was released from the Lupron (was supposed to be 2 years) when my doctors asked how I was feeling physically and I simply told the truth. I didn’t complain or ask to cut it short, I just told the truth- we who have been on ADT all know. I’m sure I fared better than most, but it’s still swimming upstream of course.
When they (and a second opinion MO) told me 12 months vs 2 years ADT was a ‘data free zone’ that was enough for me to stop!
My last 3 month shot of Eligard (subbed for the Lupron) was in September 2020. My testosterone had been <10 for the entire year of September 19-September 20. It remained at ‘castrate level’ (below 50) until last April when it began climbing steadily.
By June it was in the 500-700 range (my baseline at diagnosis), assisted no doubt by the HCG and Clomid I was given by a separate urologist with the endorsement of my MO. PSA went to undetectable after surgery (very gratefully) abd has remained there throughout.
Tall Allen had suggested a different course of radiation (including brachy boost) too late for me, which I would have taken. But other than this I have zero regrets.
As of today, 2 days shy of my 66th birthday, I have recovered as much strength, stamina, mood, fat loss etc as I can reasonably expect.
Relentless incontinence eventually led me to get a artificial urinary sphincter (AUS) last March, which has been a godsend.
My penis is a little shorter and thinner, and is not quite what it once was. However, my libido has returned well enough. My wife is fine with all of that part and so am I.
In retrospect I probably would not have chosen RP as primary treatment, but it was very nasty in there with so many saturated cores so maybe it was not such a bad idea after all.
So I am just another guinea pig. We don’t seem to know very well yet what aggressive adjuvant treatment with undetectable PSA-yet adverse features- post op can do for a man.
I do know I was not comfortable with standard of care, its efficacy basically stinks for guys like me.
Who knows what the future will bring for any of us? The ultimate unanswerable question…better scans, better drugs and more have arrived just in the time since my diagnosis.
What today is bringing to me, mostly, is profound gratitude. For modern medicine, for what I’m calling 8 months of remission so far (I count from when testosterone fully returned with PSA staying undetectable), for every single gift in my life, for the experience and support shared by us here.
Obviously I’m only as cured as my next PSA test, which I do not waste time thinking about.
I know I’ve had it easy compared to many of you so far. I deeply respect and honor the courage you all show every day.
London441
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London441
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I guess something I would wonder is whether it is proven beyond a shadow of a doubt that you really did have a positive lymph node. And I wonder if that entered the care provider's mind also when they moved you to 1 year. Seems to me you are cured, though, as you say, its only as good as the next PSA test. I guess in the back of my mind I question whether metastatic cancer can actually be cured. Your PSA was always undetectable and that never changed, right?
So did the Clomid and HGC work immediately? Are there any risks to doing that?
Looking at the results of that PSA test after the T rise had to be nerve wracking.
The doctors seem to be all over the map on whether long period of times of ADT are necessarily better.
Well Mr Anomalous there is a poignant phrase for us-‘proven beyond a shadow of a doubt’.
I beginning to think there’s absolutely nothing about Pca or its treatments that is proven beyond a shadow of a doubt! This has made for a strange trip for many of us, myself included. It is apparently the ultimate heterogeneous disease.
I honestly think I was moved to 1 year not because they were uncertain if I actually had a positive node, just more the fact that a lot of docs are starting to weigh quality of life against ADT benefits more than before.
At the juncture I referred to (1 year on Lupron) my MO at Hopkins actually wrote in his email to me on the subject, ‘ADT is just bad’.
That’s pretty straightforward I’d say.
And yes there is absolutely no consensus among the pros on this anyway.
My MO did not think the HCG/Clomid was risky per se; it made me a little nervous but as has been my habit I put my trust in him.
Getting the PSA results after the T rise has not really been much of a concern up to now, as I was pretty confident it would stay low at least this long. My next one first week of February, who knows maybe I’ll get a bit antsy preceding that one.
The problem is, I could easily start getting more and more anxious with each impending test but it’s no way to live, so I just have to let it be what it is and deal with what comes.
I feel you on all of this and have come to similar conclusions but have not been had as many tests post treatment as you. Did you get any scans prior to your RP or after other than the MRI?
I got the standard bone and CT scans, the only ones available at the time unless I wanted to travel out of the country and drop 3k or whatever. Maybe UCLA had PSMA pet then , and of course Kwon was scanning at Mayo, but the idea wasn’t even floated to me back in early 2019.
Since then, post op post treatment etc I have not had any scans no. The information I trust says no point in doing scans with undetectable PSA.
How would you feel about ultrasensitive PSA tests (are you getting PSA testing to <0.1 or to three digits to the right of the decimal point) to determine if your PSA is increasing and by how much and how quickly?
For me I don't consider <0.1 to be non detectable. I consider that to be saying my car was going faster than a horse, with the speed of a horse the fastest measurement allowed even though we can measure speed much more greatly.
I want to know what is happening and when I'm likly to require more scans or treatment. Or if I were so lucky to have the PSA stabalize.
It also helps to make decisions on when to push to make that trip. Or plan my next treatment. Make financial and insurance choices. Or just give me hope on many fronts.
Great question. Although the answer for me personally is I’m now getting ultra sensitive tests, but I didn’t ask for it. My lab recently switched over, that’s all.
While I can agree that <0.1 is not sensitive enough to give a super accurate reading, I always ask myself would knowing just how much lower than <0.1 affect course of action? For me it would not. My MO basically said the same thing.
I actually got my first sensitive PSA last test. It was <0.04. My reflexive response was ‘oh crap it’s different-more numerals’. Then I did the ultra complex math and deduced 0.04 is less than 0.1. Genius.
I did the same as you on my PSA test. I had 6 in a row that was just 0.00, no < sign. Then my urologist had a ultra sensitive test done which was <0.014, my 1st ever. They’re all e-mailed to me so all I saw was that 1 and 4 instead of 0’s. Took me about 5 minutes to calm down and understand it was better than the others.
I was told the 0.00 was as low as the standard test could read and <0.014 was as low as the ultra sensitive test could measure. I said better, I guess I should have said conformation that it’s undetectable. Anyway, I would have done a back flip if I could.
Thanks London 441!Yes, it was a load, but 2 Trials have proved that ADT + Docetaxel upfront extends life. You did everything plus the kitchen sink, and early, which is usually better w PCa.
Thanks for sharing. You have a good attitude, and are enjoying life.
This is one good path for others to study, especially newbies.
My experience is somewhat similar to yours, albeit instead of the N1 I ended up pT3b in Dec 2017, but with BCR at PSA =0.024 just 5 months after surgery. PSMA PET scan prior to surgery didn't show the ECE/SVI, and nothing at all either at BCR or again 8 months later (i.e. 13 months after surgery).
I had Decipher run on the path specimen after BCR and was disappointed to be in a very bad position (0.91 - ). Like you, I cast around for the best expertise available, and ended up doing eSRT (66Gy only given N0, across the prostatic bed and pelvic LNs, plus 12 months ADT (Goserelin) and Zytiga/pred, although I gave up on the latter after 8 months - it was really knocking me about.
My last 3 month ADT shot was in Oct 2019 and so I notionally came off ADT in January 2020 - T started to return in August, getting back to ca. 600 by Dec 20. I have had quarterly measurements since and so far it remains undetectable. I personally do expect recurrence, but perhaps not for a few more years - of course, I do hope foe a cure, but when I look at the recurrence tail in various studies roughly analogous to what I've done, they're still all inching down even out at ten years.
Picking up on specific points you made:
By tapping in to ongoing studies (primarily in the US), I formed the view that the high Decipher meant I had to do something - hence eSRT when PSA was only 0.12, with ADT + Zytiga - the latter was off-label but I had no problem getting agreement to this as trials of 6 - 24 months of ADT + Zytiga/other advanced anti-androgens were already getting underway.
Conversely, I met with a blank wall when exploring chemo - with N0, this wasn't going to happen in Australia; a high Decipher (though very rarely employed in Australia) was acknowledged as a legitimate concern, but not sufficient to open the chemo door.
When it comes to duration of ADT - my RO had done some work looking at the impact of duration of ADT on PCa cases treated with radiation only and was of the view that the risk reduction benefit I would get by going beyond 12 months was only a few percent - given my poor handling of ADT (even worse with the Zytiga), our joint view was that 12 months of ADT was enough. As I said, I corresponded with the lead investigators of several US trials about why they were choosing 6 months - 18 months, and the general view was that six months would be adequate in my situation - again, the N0 helped.
To my mind, the big issue we both face is to what extent an extended period of "undetectable" is inevitable following aggressive ADT + Zytiga. My MO was not that optimistic of achieving a sustained cure but after I had been at full T for 12 months, he said we had switched places and he was now more optimistic than me. However, papers I've seen recently dealing with ADT + Zytiga treatment of BCR seemed to indicate that second recurrence is pushed out by the treatment, rather than eliminated. The problem is that this work is very fresh and it will be another decade before we really know what works.
Like you, I have some doubts about my RRP - but it unearthed a worse situation than was apparent from MRI or PSMA PET and gave me the Decipher specimen that really drove my thinking - so I have no real regrets. I am at peace with the notion that PCa may come back, knowing I have given it my best shot... and at the same time, I've learned that I'm crap at ADT and will need to try a lot harder if there is indeed more to come at some stage.
Blackpatch I see no reason to be pessimistic, though it seems you are only mildly so. Or perhaps realistic…or is it fatalistic? Assume you’ll die of something else first.
In fact, if you really are ‘crap at ADT’ and stay that way if you have to return to it then you are almost assured a earlier exit. But that’s pretty far down the line, and with today’s medicine. There are advances coming continuously as you know.
And if the advances don’t arrive in time and you wind up on the long haul ADT bus, I’m willing to bet you won’t be crap at it anymore!
If it were me I’d start seriously ramping up my exercise now, just in case of that and many other reasons 😀
My plan is to monitor PSADT for a few months to try and get a handle on the urgency of the situation, whilst have regular PSMA PETs (readily available in Australia at minimal cost) to see if there is any discernible localisation that could be hit with SBRT. I realise that this would be almost futile, but it could buy me some more time before needing to commence ADT.
I also keep a very close eye on emerging treatments, in the hope that something may emerge... and I am gradually recognising the reality of needing to improve my lifestyle habits (that are by no means bad, but fall short of what I believe would be required to survive ADT). I get that the benefits of more regular exercise etc go well beyond ADT survival - but I guess the lifetime habit of putting work ahead of exercise isn't easy to shift.
Keep after it. If at all possible start exercising now, or more or whatever applies. You said it well-the benefits go far beyond ADT survival. But you also want to be as prepared as you can just in case.
No chance to help me now as I’m on hospice care after failing to complete the 6 cycles of radium 223 and contracting hospital acquired pneumonia in July 2020 from the NHS:(.
Back in 🇺🇸 with my wife’s expensive medical insurance I’ve had more personalized care which has helped clarify my status.
I must say together with all the supplements( high protein, high doses berries and magnesium etc together with resistance therapy I’ve clinged to life despite losing 30lbs in 3months.
Now I’m fully suffering from cancer cachexia which is more debilitating than the multiple cancer spots in my spine, pelvis and sternum.
I think the new legions in my liver are taking their toll now.
I’ve stopped eating since December 16th and barely drink water.
Thankful for the medical cannabis to manage my pain without docile. Still sad for the loss of appetite and mobility but grateful for my wife, daughter, family, friends and loving congregation who really show they care.
In retrospect since all regular treatments failed, I think the best I’ve felt was in the sun, on a plant base diet, taking regular exercise, hyperbaric oxygen treatments and testosterone shots.
I knew back in Jan 2016 it was terminal but I couldn’t imagine how awful the ending would feel.
I’m continuing to place my trust in my Heavenly Father to help me rest until it’s time to reunite with my family.
There aren't any words that I can think of which may comfort you during this most painful time in your battle against those FN little bastards. The only way I can think of how, is the way you ended your post above: "Place your trust in your Heavenly Father to help you rest until it's time to reunite with your family". May God Bless you, your family and your friends...from a brother and a friend....
I’m sad to hear this, always so hard to hear of another brother suffering. May you be at peace and be supplied with whatever you need to be as comfortable as possible. You are a good man to write, I appreciate it greatly.
My situation is close to yours although you’re about a year ahead - still on ADT after surgery and radiation. Opted to skip the chemo. Although ADT side effects haven’t been hard, looking forward to stopping In 9 months. PSA has been < 0.006 for 6 months and testosterone is <3.
Great luck to you! Yes the early chemo was described as superfluous at best (in my case) by some due to the absence of distant mets, but said to be newly found beneficial by others. It is not proven one way or the other by any means. Keep us posted.
Your story is astoundingly close to mine. I just turned 66. I'll document mine in the profile, likely using yours as a map. Thank you for the words regarding surgery. I had a robot-assisted radical prostatectomy on 7 May 2019 after very similar biopsy results. Your doctor's words help me with some minor regret regarding surgery. My margins were clear, no SV nor local LN involvement. His observations were identical to what I heard. There is only surgery before radiation. The anatomical landmarks used for precision surgery are apparently lost with radiation.
So the quiz question in my mind now is "what surgery did I have in mind post original RARP?" I think I'd have taken a more careful step had I known about this website and Tall_Allen's advice. Ultimately the info gained in the path report didn't reflect my reality two years on. So the "gain" of surgery as a cure or good recon has turned out not to materialize. I have the same issue with incontinence and your "nerves were supposedly spared" nearly had coffee out my nose! Right. "Supposedly" is operative. I will likely go after the artificial sphincter surgery, but the BCR put a pause on that while we wrestle my next episode.
I bounced around for nearly a year in the .02-.04ng/mL PSA terrain. Almost fell asleep about it, until it started doubling. BCR in August 2021/PSA .22ng/mL. Bicalutimide 30D, Eligard started 14 Sept, IMRT/SBRT in the October/November window. Second Eligard in December, and just started Zytiga/Prednisone add this last week. Two years is the SOC. But it's early days.
So far, no real complaints, hot flashes, standard issue. I live in the redwood forests of the Santa Cruz Mts and have plenty of real-world HIIT to support lively German Shephard augmented mountain road hikes. I found TRX/Suspension workouts help get a good burn and seem to help with muscle mx lacking a gym. I agree, diet is key as is a healthy philosophy. I found Network Spinal Analysis a great channel for keeping the mind/body connection in good nick.
It's good to hear your story, lots of parallels. Thanks for that!
You’re welcome, always good to connect with someone in the same division, so to speak. Even if we are essentially left to shake our heads in awe at the fecundity, resourcefulness and resilience of this disease.
Urologic surgeons are hopelessly overmatched too much of the time, and the layman’s perceived imperative of ‘getting it out’ leads us to be more so!
So you received RP in May of ‘19 and no other treatment until August ‘21? Sounds like it was a particularly swift PSA rise to .22…
Fortunately you’re addressing it, kicking that can down the road like we do-excellent. Love the exercise. Please say hello to the redwoods for me. Great luck to you sir!
Yes when it decided to come back, almost exactly a year of bouncing from .02-.04 and back, then it went on six month intervals .04, .08, .16. We did an off cycle test and it came back a .22 so it was gaining steam. I could have called BCR earlier, but then the following Ga68 PSMA scan wouldn't have been as helpful (maybe still undetectable other than PSA). And if we started the Latitude protocol at say .08 or .16, we would have lost the ability to use that scan. So, timing-wise, if you have to call if for recurrence, we did OK. Later would have been trouble I think. That "Data Free" zone is becoming like dark matter--nothing is known about it but there appears to be a growing population existing there.
The redwoods are like time machines. Most well over 300 years, a few over 500. We live amongst them almost like a treehouse. Distressing to see them come down. A neighbor cut 28 of them in adjoining land (a code violation) we couldn't stop in time, right around when my PSA started its march. I suspect those events are connected. Important to maintain an even strain when your health is involved.
A small detail I Ieft out was the surgeon saying upfront he did the procedure (RP) entirely himself, and had low regard for doctors who began the surgery but then quickly handed off the remainder of it to assistants. He said they could do more surgeries this way but considered it unscrupulous.
I went in knowing only that he had a very good reputation. He seemed humble and unassuming except when making that point. He said it had become quite common.
I think of this whenever I see accounts of detectable PSA post op, which sadly is often. I can’t know if it’s a factor, but it wouldn’t be a surprise.
Regardless I was naturally relieved to see mine undetectable post op given the ECE, seminal vesicle invasion and positive lymph node.
I don’t think he expected my severe incontinence to last though. He had quoted the odds at 5%. I now think that estimation a a standard may be a bit rosy.
Of course, an unfortunate factor there is that once subsequent adjunctive radiation begins it kills the likelihood for further progress (regaining continence) . The six months I had to work with was either insufficient or wouldn’t have mattered anyway.
I guess my point is your cancer never showed any signs of metastasis, as far as PSA goes. You were undetectable after surgery, and presumably all the way up to radiation, so I am wondering what circumstance caused that if you had a positive node and seminal invasion. Seems like if those two things existed, there would be PSA and I am wondering why that is not the case
Well they remove the seminal vesicles, and the node may have been positive but was a micro metastasis not yet expressing enough PSA to be detected? I am guessing here.
One of them, HCG, is a substance that directly tells the testicles to make more testosterone. The other, Clomid, tricks your body into thinking hormone levels are low, which stimulates the testicles to produce more testosterone.
(This is why I find this site so helpful as I continue to learn new things almost daily)
Based on the video above posted by Duke any thoughts of going to high T?
Mohit Khera at Baylor seems to suggest it might be helpful in surpressing PSA.
My last Eligard shot was in September’20. I started the HCG and Clomid in December ‘20.
No rise in T until May of ‘21 but it did rise swiftly from that point. I stopped taking both in August of ‘21 when it reached the 500-700 range.
Hi T was not suggested to me. I would not have taken it if it was, not at that time. Once you start taking T you are bound to continue. I was receptive to kick starting the pituitary though.
Had I not recovered to normal levels I would have considered TRT sure, but I would have probably waited a lot longer. I wanted to give it my best helping it come back without further assistance, through diet and exercise.
Since my T has remained in the normal range I see no need for additional testosterone. I feel great and see no point.
Anyway it was naturally quite high when I was younger, truly a double edged sword.😀
Oh yes sorry I see that now. Your 'plan was to get radiation if PSA went above 10'. Was Scholz in on this? That seems high for a cutoff. And that biopsy seems late in the process. Do you have any regrets on the course of your treatment so far?
Regrets, I’ve had a few, but then again, too few to mention…
Extension of QOL is my guess. And who’s to say what the wrong course and right course is. The cancer seems to do what it wants to do and when it wants to do it. Fortunately, for you, yours never really was interested in doing much. I don’t know if you had a Decipher done, but I suspect it would have been a low score.
We’ll see about all that. I think anytime you have a 4 in your Gleason and it’s made its way to the seminal vesicles that is very high risk by definition.
Then the question becomes how beneficial is it to attack so aggressively early. Chemo in particular may have been pointless in my case.
It seems the disease is as heterogeneous as we are; it clouds all the statistics.
On a lighter note, any mention of ‘My Way’ always reminds me of a bar I was in many years ago where a a French singer was performing it. As could happen to any of us, a language barrier appeared, causing him to sing the following:
“Regrets, I’ve had a few
But then again, a few dimension”
It still brings a smile, and gratitude I never had to sing any French songs.
In hind site, yes of course, I was not taking PCa serious enough. No regrets, that is just not the way I think. It is what it is, now I have to deal with it as best I can.
I was told early on by one MO that he had never seen the kind of cancer I had become virulent but he also said that I should not rule out getting another more aggressive cancer in my prostate. My PSAs stayed in the 3- 6 range for years and MRI and ultra sound scans showed no progression.
Covid epidemic kept me out of the doctors office and from getting tested regularly. My image of my cancer was that of a slow moving threat that I could deal with.
I was surprised how much it changed during the 18 months.
I am a fallible human dealing with other fallible humans.
I want to follow your progress, may I suggest that you copy your post to your profile , as it is so hard to find threads and past posts of interest on this site. Memory is the one side effect of Lupron I am not sure that I am not suffering from...
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My Last Lupron Shot (maybe ever!)
