When my husband (age 52) was diagnosed with metastatic prostate cancer two and a half years ago, he was told the outlook was "grim." Everything we read told us once it moves to the bone (his has) then you're looking at months, not years, of life left.
He had TEMPUS done, which was basically the oncologist telling us, "You're screwed, and here are all the technical reasons why." (He has a rare mutation never before seen in prostate cancer, his Gleason is 8, there were several other genetic tests done which showed no further treatments recommended after the initial ADT.)
He began ADT (Lupron + Zytiga) and responded very well. His PSA went from 45 to 1.52. At that point, because is still so young and responded to the ADT so well, they decided to do complete radiation. So the bone lesion was given radiation, the prostate itself, and the lymph nodes. His PSA continued to drop until April, 2024, when it went up from .51 to .67 in a month.
His oncologist had been somewhat disappointed he never achieved "undetectable" but as long as it was staying somewhat stable and not rising, he was satisfied. He's ordered another PSA test in early June to see if the April rise was just a blip or if it was indicative of the ADT beginning to fail.
But yet... it seems in all my reading and talking to real people with advanced prostate cancer, the old thinking of "once it's in the bones, you've got 18 months, tops" is no longer true. Everybody seems to be on their 7th year of ADT, or their 12th... or they did ADT for 9 years and then started just pallatively zapping lesions as they pop up with radiation to keep it at bay for 6 more years and still feel good and hanging in there.
I guess what I'm getting at is the stuff the docs say/medical studies I read seem to contradict the real, actual, experiences of men who are living with this.
I know dudes still die from it. But it seems they die after living with it for 15+ years. Good years, too... not just a rapid decline in a matter of months.
What gives? Who to believe?
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Anatalya
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What gives? Who to believe? IMO these are the questions/issues with studies versus real world, and the horrible marketing and management of this disease.
Clearly, early detection and not having a most aggressive cancer are keys to longevity. I accepted this statement when I was diagnosed nine years ago with cancer that was out of the gland but not to bones - 'most men die with and not from prostate cancer'. The ratio is large - about 35k deaths in US each year with over 3 million with disease.
As my health and fitness are otherwise most excellent, my focus remains to not die from this disease. I continue to usPSA test every 1-2 months, with at minimum annual imaging and blood biopsy testing. I am confident that if it comes to it long-term ADT will give me years of survival, however, I continue to do all I can to defer ADT/CR for as long as possible.
My docs use the GUARDANT360 CDx blood biopsy. To date, my result has been 'Not Detected". I find this most useful and valuable. (note some members comment against this investigation at my usPSA level).
Annual imaging has been PSMA PET, all 'clear'. Upcoming, I will be getting a fluciclovine PET for comparison. I am doing these well ahead of common practice 'guidelines' - but then - I find fault with the guidelines.
I do these with frequent usPSA testing to not give this beast time and obscurity.
As a researcher by profession myself, statistics are just that: they’re statistics and have confidence intervals that need to be taken into account (this tells you the range of life expectancy, in this case, after a certain diagnosis). My father metastasized in 2019 to the pelvic bone, and we’re still looking at other treatment options for him now 5 years later. I don’t believe just because PCa metastasizes it’s an immediate death sentence. The progression typically still is slow though just know there is no cure at this stage. Everything will be palliative but the progression is typically not as bad as with other cancers (like lung or pancreatic).
First off. Stop reading ALL the bullshit from every source available. You will become overwhelmed and confused. Two years ago a PSMA PET finally showed I had mets to my bones. For years other scans showed “shadows” on my bones. I just posted yesterday. As I said in my post, I have had this disease for 19 years. After 3 rounds of Pluvicto all but one of my mets are gone or receding.
Have some faith. I was 45 when diagnosed. If you don’t like what the oncologist has to say or you don’t like his bedside manner, find a different oncologist. Best of luck.
I agree with you wholeheartedly. Where is the incentive to cure cancer? Think of all the jobs that will be lost not to mention the hefty earnings for all the drug companies that don’t have a cancer cure!
I am far from a conspiracy theorist. After working in corporate finance for 35 years, I am analyzing the cost/benefit ratio for a pharmaceutical company to develop a cure for cancer. Please don’t make assumptions of members on this site when you don’t know them. I utilize my intelligence, work experience and education to make my assessment. I could be completely wrong, but living in a capitalist country, I believe my observations are valid.
Hi Anatalya. Your original post attracts serious attention. That's why I wanted to respond. First of all, please see my recent posts which are updates from my situation about 2 years ago. You may find them interesting. healthunlocked.com/advanced...
By way of background, I'm late 60s with child still at home and stage 4 high volume PCa to bones including spine. Triplet therapy! Successful so far and yet fatigue. I struggle to exercise and exercises is really really important not only for quality of life but possibly also for LE. Almost surprisingly, as I told my wife a couple of months ago right now I just feel normal. Except for the fatigue.
Now some comments (and you can see more details in the posts).
1. A CRUCIAL DIFFERENCE - PCa which is not metastasized is completely different from when it is metastasized.
2. OLIGO? - If someone is metastasized but is defined as oligometastatic (five or less metastases) following various drug and or chemo therapies etc but also zapping or cutting out the metastases is apparently a very good idea. This sounds like a protocol that your husband did?
3. NEW STATISTICS - With the new therapies such as triplet therapy or doublet therapies etc life expectancy is increasing. When I was diagnosed the dire 18 months "if you're lucky" message was easy to find, and was in fact shared with me and my wife. It seemed reasonable because of the pain. However being fortunate to have been put on triplet therapy, this changes everything. I responded very well fortunately and there has been no organ involvement to date. The latest statistics for life expectancy for the newer therapies are much better.
4. SURVIVOR BIAS - Reading anecdotes on forums provides a very biased source of information. Because of the guys who've been living with this stuff for 5 or 10 years or more - which is great - is a case of selection bias. People who didn't make it don't post.
5. REGULAR DREAD - I have blood work including the PSA test about every month and a half. I dread it. We dread "resistance" as you know. And there's so much research about to how to put off progression to resistance. And scary things like NEPC or AR negative cancer. So far so good ...
6. CVD RISKS - In the meantime and I cover this as well in my notes, a significant percentage of people in our situation die from cardiovascular disease or heart attack, in significant part exacerbated by ADT and other therapies. Again exercise. And also there is some evidence that working hard to avoid metabolic syndrome let alone diabetes, is very important. (As Mr T has pointed out there is zero clinical evidence that a plant-based diet is of any help.)
7. SKELETAL RISK - Another major risk which can contribute to catastrophic decline is a skeletal injuries. This is a controversial topic and I don't take any of the scary drugs for this. But they may be good for some people. Again exercise, especially weight-bearing with micro shocks (see below another reply with clarification on micro shocks).
8. A NEW, BETTER NORMAL - I'm coming up to some major scans and tests again and this will be almost 2 and 1/2 years. And I'm really hoping that I just keep ticking along like this where the thing is kind of, sort of, asleep. I'm just one anecdote and who knows what might happen in my own near future but there is developing evidence in statistics that with the help of meds (I also did chemo) men with metastatic PCa might have more time in a steady disease state with a reasonable quality of life.
These are my opinions - I welcome any contrary opinions or analysis.
A big success for you & your husband, A.
P. S. - Anyone interested in updated life expectancies can see my reply below:
I actually thought of your point #4 there, with survivor's bias, after I had posted. I was thinking well... it makes sense you only hear from people who have survived 5+ years because they're the ones who are still around, writing and talking.
the damn point 4 my friend....but we will keep fighting and I will keep looking forward for the moment when I will announce you that we are going to be cured 😜😜😜
meanwhile you are right, statistics have not been updated in a while...
my philosophy: being alive in 5 years is not as difficult as being progression free for 5 years (and yet ARASENS...), being alive and have great QoL for 10 year is harder than the 5 years target...none of these events are as hard as for example winning even a small lottery...so I decided (and this does not mean that I never get depressed and so on) that 5 years with no progression or almost no progression is feasible, if I can do it for 5 years, considering that medical knowledge per this moment doubles every 72 days, I will be able to go on for another 5...at that point I think the problem will not exist anymore...my geneticist was amused by my plan but she also admitted that it's quite doable from her point of view...let's hope!
I guess you still doubt my prediction of.....93............... You see my Mother was a veil baby and so was I.....She told fortunes for friends by reading coffee grinds in cups left over in their Turkish coffees. I sometimes am called psychic because of my predictions coming out of thin air.
Really good question. And to give a good answer I looked it up again. And I was disappointed to find that what I thought it meant, and I understanding was from my own reading and even discussing with people, but I Google search just now for the term "microshock" only comes up with material associated with little electrical shocks!
This is not what I meant or intended and I was shocked 😃. The meaning that was intended is that one exercises in a way that provides a little bit of impact such as when one is walking fast.
Obviously we want to avoid impacts that stress the bones to a point where one is at risk for injury. The right kind of exercise can contribute to helping maintain bone density.
Which of course is a concern of everybody with metastatic prostate cancer on ADT.
However, apparently the bones are triggered to build more density when subjected to repetitive safe impacts. What I was calling microshocks and probably won't anymore.
Here's a comparison that was helpful for me. Well swimming might be enjoyable and help flexibility and maybe a little cardio, it does not help at all in terms of maintaining bone density.
On the other hand if one is safely lifting weights, or walking up and down stairs, or briskly walking on a hard sidewalk, or just lifting weights, all these things can be helpful for both muscle mass maintenance and bone density maintenance.
If you have damaged BRCA2, your DNA repair system is not working as well as if you had intact BRCA2. PARP inhibitors (like Lynparza) don't care if your cancer is castrate resistance. But your providers care that your cancer still responds to ADT, which is likely more effective than PARP inhibitors. PARP inhibitors add another layer of damage to DNA repair so the idea is to kill-off cells that already have problems with DNA repair because of a BRCA mutation. As such they are, by definition, toxic. ncbi.nlm.nih.gov/pmc/articl...
I am no expert on PARP but here is what Copilot AI has to say on the topic.
"There are also some naturally occurring compounds that act as PARP-1 inhibitors:
1) Polyphenols: These compounds have potent inhibitory effects on PARP-1. Examples include:
a) Berberine
b) Turmeric (curcumin)
c) Honokiol
d) Resveratrol
e) Epigallocatechin gallate (EGCG)
2) Vitamin D: Vitamin D has been found to inhibit PARP-1 activity.
3) Fish Oils: Omega-3 fatty acids from fish oils may also help modulate PARP-1 function.
These natural inhibitors not only have potential medicinal uses but may also offer preventive benefits against chronic inflammatory diseases through dietary supplementation2. Additionally, other compounds like chlorogenic acid and quercetin have been identified as natural PARP-1 inhibitors3."
"Everything we read told us once it moves to the bone (his has) then you're looking at months, not years, of life left." Boy, you and I read very different things. I read lots of medical studies, and none say that.
Obviously there is a long tail here. 1 in 3 making it past 5 years some of those might make it 10 years or more. Or the treatment landscape may have already changed enough that the data is already wrong.
"Median overall survival after a diagnosis of metastatic prostate cancer in HICs has improved from about 2·5 years to about 5 years since the advent of additional hormonal agents (abiraterone, enzalutamide, and others), chemotherapy (docetaxel and cabazitaxel), and radium-223, with parallel improvements in symptom control and quality of life."
This figure is from a long article from a high profile source, which is a big review of worldwide trends, challenges and with a special highlight on differences between high-income and middle and low-income countries. ("HUC" = high income countries.)
I went for my search and looked for materials in the last year and the 33% is mostly what comes up. (I'm not sure if this is median or average.) But that 33% figure is not so helpful if you look at at population exclusively treated with new generation therapies in the last 3 years.
The Lancet Commission on prostate cancer: planning for the surge in cases
Here's a few times it's referred to in his notes. The oncologist had the TEMPUS results reviewed by peers because it's never been seen before (doesn't mean it has never happened before; just has never been seen since this type of testing has been done.)
If there's something specific you were wondering about though, I can look for that. The entire TEMPUS report is H U G E ! And confusing. And basically boiled down to, well... you have mutations, but not any that we have treatments for... and also you have really stable cancer genes, which sounds good but here's why it's not... and stuff like that.
I don't think I've ever been harsh here before on Health Unlocked MaleCare when making a reply. But the comment "But the more you study, the more you know that prostate cancer is not that bad" is cruel and laughably incorrect.
[UPDATE: I'm leaving my post here even though the original long post from which the above quote is taken has now being changed. The view that prostate cancer isn't that bad is a view that is not uncommon - and possibly explained by a failure to distinguish between prostate cancer and prostate cancer that is metastasized. This confusion when married to rhetoric can be very hurtful.]
Because of PSA testing policies, a larger and larger number of men are diagnosed with cancer where it has already been metastasized. (I had no symptoms whatsoever except for what started as a dull backache!) And my doctor was one of those lazy doctors who was against PSA testing. And thought the DRE was enough.
When I was diagnosed with high volume metastatic PCa, my PSA was over 1700. And I had mets to my spine, terrible pain in the beginning of a gait problem, due to cancerous masses pressing into my epidural space.
I was very, very fortunate to be given triplet therapy.
Triplet therapy is even now not universally adopted in wealthy countries such as United States and Canada. But it is unaffordable in low and middle income countries. My triplet therapy has been very successful so far. Of course resistance awaits!
If I have not been given triplet therapy my life expectancy was probably a year and a half to two years at most. It's now been over two years and I'm doing pretty well.
But I calculated that because my PCa was caught late, after metastasis, and considering my general health, my normal life expectancy, and my new life expectancy with PCa, that I have LOST BETWEEN 11 AND 19 YEARS OF LIFE EXPECTANCY!
11 and 19 years of life lost with my wife and our children and one grandchild already. I used to be bitter about this because this loss of life was completely avoidable if I had had annual PSA testing!
Ensuring the time I have left I have zero testosterone, which drives fatigue. And skeletal and cardiovascular risk. You can die from a heart attack exacerbated by PCA therapy. I don't think I have brain fog, but then how would I know? 😃
And while I have avoided surgery and radiation due to the fact that "it was too late", surgery and radiation are terrible on the body and the sequelae that you have to live with significantly diminishes one's quality of one's life.
"Not that bad"? Might apply to men with prostate cancer which has not metastasized. My story is just a single data point. But the principles driving my situation apply universally.
If your prostate cancer is metastasized, you will sadly likely lose many years of life (dependent of course on a few things, especially how old you were when you were diagnosed).
And although the therapies are getting better (see my post in this thread above), not everybody is getting the best therapies yet. Without these new advanced therapies, apparently you have a just a 33% chance of surviving 5 years. Or put another way, a 66% of dying within 5 years.
Sorry, I didn't mean that. It was poorly written. I know what you feel. My father was unlucky as well. Primary doctor wasn't testing PSA at all for 5 years. When he eventually had the PSA test done, he had PSA around 135 and bone mets.
Thanks W. I appreciate your comment. I'm going to leave my reply up because the topic is real and a lot of people have a misunderstanding about the seriousness of prostate cancer. And it is a beautiful thing to care about one's father ❤️.
The post is good. Hopefully, it will help somebody. And you are right about everything: PSA testing, therapy, SEs, shorter life, QoL, ... PCa really changes the life of a person and his family.
Hi D and W. Your comments highlight for me that there's an additional positive perspective that we could look at.
And that is hard to describe, maybe we can call it a "living with metastatic prostate cancer steady-state".
This is a state where are quality of life is reasonable and the cancer is not progressing; it's not going away and we have the side effects from therapies, but there is a semblance of normality.
We acknowledge in the state that there might not be traditional intimate relations. And we may suffer from fatigue especially. And we're trying to exercise.
This living with PCA steady state is probably easier for people like myself who didn't have any destructive surgery or radiation. So I can't speak to that but maybe that also happens as well.
This new state of living with metastatic prostate cancer is only possible because of the new therapies which push off resistance.
I contrast this with my impression of what was the situation prior to new generation medications and programs that include chemo and drugs together at the same time.
Before the introduction of these new therapies my impression was that there was no steady state, rather it was a dynamic state.
There was more rapid progression to resistance and this shorter period of time was often characterized by lowered quality of life. Especially for men with high volume metastatic prostate cancer, it was time to get your affairs in order. (After my own diagnosis the first thing that I was offered and encouraged to engage with was palliative care.)
So my suggestion is that there is this new intermediate stage between diagnosis and initial interventions and the eventual scary end.
This is a positive thing. It gives us room to think and to live. And maybe even to do whatever we can to stay in this state as long as possible.
And defining and naming the state is also positive because it's not so crazy dynamic.
In contrast to this steady state, my sense from talking to people and reading posts is that many people are in whack-a-mole world where there's one intervention or new therapy after another and ongoing fear. And step by step declining quality of life.
Of course, at my next blood work and upcoming scans, I could learn that I'm no longer in the steady state and that progression is happening! I need to do more exercise.
Is this a positive message? Especially for people with metastatic prostate cancer? People without metastatic prostate cancer live with it for many years. It's nice that there is now the possibility of "living with metastatic prostate cancer". For a while! Only for a while. But a while.
"living with metastatic prostate cancer steady-state,” as you’ve so well defined it, is exactly what I’m presently experiencing following my 1st Pluvicto treatment.
Happy to report I haven’t felt this well since before I was diagnosed, much like you JITM, de novo Stage w/widespread(bone-only) mets.
I know the data suggests it might not last much more than a year or so until another decline, but I’m still holding out hope I’ll land somewhere in that lucky 10 or so percent who’ll get around 20 or more months of rPFS; and by that point be eligible for a trial with a new treatment even better than TRT. Which would, of course, then get me to where Maxone ‘predicts’ : i.e., something near to or even in the curative realm!
As you know so well, keeping the best possible outlook, no matter the cards we get dealt, can only help make our QOL the best possible under the circumstance. Wishing all here all the best in their journey, wherever it might be now and in the future.
They gave me 5 years in 2014 then 18-36 months in Feb 2019. I know guys that were in my same position with same meds and they have passed. For whatever reason I have had a great response as to Lupron/Xtandi.
I work out like a mad dog and live life to my fullest. I do wear a Buprenorphine patch now for pain.
I never had a doctor tell me how long I had to live. First visit to my last oncologist and he said “wow, twenty three years, let’s see if we can’t add another 15 to that”. My urologist said he doesn’t give out those numbers because he has seen many people he thought would be dead soon and they are still around many years later. The only one who knows how long I have can walk on water and I never met a doctor who can walk on water. God bless.
Bravo Gary! Keep going! May I ask please if you have any metastases? Heaven forfend that you do. It's helpful to understand the difference between a PCa journey with and without mets. Thanks!
Max Psa was 5664 May 22. Mets in nodes, lungs, ribs, pelvis, both femurs and spine with two compression fractures. I declined all treatment until mri showed compression fractures and urologist told me if I don’t start Lupron I was looking at a catostrophic spinal event. Psa bottomed out at 6 after 10 months and worked up to 10 when I agreed to see an oncologist who put me on Abi and 5 mg prednisone as my Psa reached almost 20. Psa is now 1 after 6 months. I am taking low dose Abi, 250 mg with food and 5 mg of prednisone. Tried Xgeva and had side effects. Dropped Xgeva as my bone mineral density showed normal on dexa scan. I had scans in 2021 and then again Sept 2023 before start of Abi. And the term interval resolution was used several times. I have no idea why I responded so well of why my side effects are so mild but I am a man of faith. When I was seeing a urologist and my Psa was 107 he asked me what I wanted him to do and I said just help me monitor it and tell me when it gets to the point that if I don’t do something I’ll die. I told him that until God wants me I am immortal and when God does want me there is no doctor that can add one second to my life. I truly believe this and thank God for every day. God bless.
If you ask and insist they will give you your statistical time to live. At least in my case they did. I wanted to know what I was up against. I had a buddy who asked for the same reason and his time was exact. I’m lucky and blessed that I’ve had a complete response to my meds.
Regardless of the statistics and survival curves there is no reason one has to be in the middle of that curve. SOMEone is further out on the longer survival curve. Many someones. Why not him?
I had same dx over 10 years ago, stage 4, Gleason 9, age 54. I remember a doctor referred to it as “tragic” in a written report. Lots of treatments, good doctors and lots of prayers for Gods healing hands (most important of them all) and my latest PSA I just received today was 0.07. I am blessed.
Snuffy Myers early on until he retired, then Oliver Sartor who was at Tulane now at Mayo, he is my current PCa oncology specialist. He coordinates with my local oncologist.
Re: “He had TEMPUS done, which was basically the oncologist telling us, "You're screwed, and here are all the technical reasons why." (He has a rare mutation never before seen in prostate cancer, his Gleason is 8, there were several other genetic tests done which showed no further treatments recommended after the initial ADT.”
I’m glad I don’t have a negative Nancy or Nate for my doctor.
Doctors telling patients you don’t have a chance is in so many words is so hard on a family regarding PC. You do have a very good chance to prolong life.
I had to fire my first oncologist as he was a negative Nate. Glad I did because My new oncologist is positive as well supportive and encouraging. Thinking positive with prayer has brought me out of a very dark place in the past. Hope you could experience a better relationship with your providers.
I got an estimate of 3 to 5 years with bone metastases and immediately discounted it. It's undoubtedly based on facts but it's implicit that some men live a long time and some men don't. What do you gain by wondering how long you have to live when anything can kill you in the meantime (car accident, freak accident, undiagnosed disease, some diagnosed disease that suddenly gets worse, etc etc etc)?
You have today. You have the relationships with friends and family. Make the most of them while you can. Best of luck to everyone involved.
Be careful where the information comes from is my first thought. Also, the information - statistics - prognosis are averages compiled over time from studies and actual observation. As with any cancer every case/prognosis has its own characteristics and numbers. None of my doctors have talked about time frames of survival and nothing I have read has either. Yes, there are % of survival based a broad parameters. Application to every individual is impossible. Treatments and response to treatment vary from person to person, adjustments to lifestyle can impact outcomes, genetics apply, etc. ---- I was diagnosed 6 years ago - Gleason 9, 1 lymph node showed positive. At no time did my doctors give me negativity in their discussions. Advances in treatment continue, new medications continue to be developed, and understanding of the disease continue. This week I ran the course of 2 years on ADT and discontinued Abiraterone and Prednisone. I feel great, nothing has interfered with my life and my doctors are very pleased with my response to treatment and my future prognosis. ---- my final thought, be careful of too much information, keep open communication with your doctors, seek second opinions if in question, and realize that yes we're all here to support and give feedback of our own journey. Staying positive, discussing where you're at both in treatment and emotionally is important. The emotional side can be difficult, we're all here to help as we can.
Every post is different. We all have different genes, lifestyles (I. E. Diet, exercise, stess) and none of us has exactly the same Gleason score, tumors (including their locations), number of undetected can we cells in our body….So - everyone’s case is unique. Having said that- I have no idea where you heard that once PC spreads to the bones, you only have months to live (as opposed to years). I believe the Statistics say that is almost never the case. and whoever told you that should stop talking and giving advice.
I was told the same thing 22 years ago and I AM STILL HERE THANK GOD . My problem is that 2020 i got COVID-19 and my PSA started moving fast . The doctors kept on telling me not to worry since so much time has past . I was operated in 2002 in Toronto . I came back to my birth place in Europe so that I can die where I was born but as you can see I am not dead thank god . last October my PSA went up to 155 and I had PET SCAN done which shows that in the bed of the prostate there is new growth and some mets have gone into my pelvic . Since than I am on hormonal treatment and my PSA cam down to 55 now . I am taking XTANDI 160 mg every day and implant of RESELIGO 10.8 mg injection in my stomach every three months . The doctors told me that everyone who had Covid -19 has the same problem with PSA going up very fast and they don' know why . Good luck to you .
I had the same reaction with Covid. That was the first time my family thought I might not make it. The second time was when my Psa hit 5664. And yet here I am, praise to my Lord and Savior Jesus Christ. God bless.
I have a theory on that. A year ago I contracted long COVID that left me with tachycardia. Cardiologist put me on a beta blocker (Concor 2.5 mg daily) that lowered my PSA. Less cardiac pulses - less blood circulation - less hormonal transfer capability to the PCa cells. No biology here, just fluid mechanics.
Believe a top notch prostate cancer oncologist in a team setting, reputable websites and read research articles about what's coming out of clinical trials. I recommend spending some time really educating yourself and finding a medical center well-known for treating prostate cancer.
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