I have a serious question for the group. How fast does Prostate Cancer progress? Let’s use two scenarios. Intermediate unfavorable to aggressive.
The reason I ask why is because I’m seeing men diagnosed with PSA’s in the 500’s to 1000’s & incidentally it was found through a routine blood test” with no symptoms.
My question is, did they have PC for ten plus years or did they get Prostate cancer and a few years later have a PSA this high?
If you get routine (yearly) PSA testing, you are extremely unlikely to have PSA that high upon diagnosis. As for how long someone with PSA of 500 to 1000 had the PC growing, we have limited information because in nearly all cases, the PSA was not getting tested regularly. It is probably safe to say it was a number of years, since in the cancer world, PC is relatively slow growing.
I guess if someone can come up with a study of men who refused treatment for their PC, it could answer your question, and it might even be helpful in its own way.
See that’s why I struggle with this. There are no studies from men who refuse treatment. What’s more alarming is not one of us is asking WHY NOT? I know there’s studies but I guarantee they’re internal! They will not release that information because more men would refuse treatment.
If there are men being diagnosed with PSA’s in the 1000’s with no symptoms…. Found through routine testing…. It really raises my eyebrow!
and all PCa are not the same. Some more aggressive, etc. And some change over time. One size does not fit all!
i think if you dont treat for many years, and it metastasizes to your bones, you will start having pain in your spine, pelvis etc.
A serum PSA value of 100 ng/ml is highly predictive of bone metastases.
The most common symptom if cancer has spread to the bone is bone pain. It is usually there most of the time and can wake you up at night. The pain can be a dull ache or stabbing pain. Your bones might also become weaker and more likely to break (fracture).
,92.3% of PCa patients at diagnosis had PSA levels 500, >1000 and >5000 ng/ml accounted for 0.20, 0.18 and 0.03%, respectively (4).Sep 19, 2014
Thank you but those statistics are stats that I’ve already found myself. My question is why aren’t there any reports on men who has refused treatment? I know someone myself that was diagnosed a 3+4 with lymph node involvement & refused treatment in 2018. Guess what, he’s still alive. In fact, he monitors with his urologist. PSA has increased from 12 to 39 & is currently at 27.
men who refuse treatment...
as opposed to Active Surveillance.
some doctors will offer AS with 3+4, or maybe 4+3 under certain circumstances.
but with monitoring, and once it starts getting more aggressive, they treat.
the gamble with AS, is that if/when you need to treat, the cure can be way stronger, than if caught earlier. eg. tri-modal surgery/radiation/hormone
you need to research AS stats. or join a group for that.
I remember seeing something about AS, over half might need treatment inside of 10 years. So, yes--some on AS will never need treatment.
but i can guarantee, the higher your risk--PSA/Gleason, the more sure, and sooner you will require treatment.
All due respect, most of these men with extremely high PSA’s that I’m referencing have Gleason 9’s & 10’s. My question is meant for those who are not going to rely on the literature that is fed to us but instead the critical thinking part of us.
Why aren’t there any studies released about men who refuse treatment? Do you really believe every single man who is diagnosed gets treated? I know one myself that has denied treatment & had lymph node involvement. He is still alive six years later.
Me personally am having trouble understanding the rush or why treat at all when as the gentleman above mentioned are being diagnosed with PSA’s in the 1000’s, with NO Symptoms. The explanation of a painful death is getting old. Thats not to say that scenario isn’t possible either, but my point is… the other side of the coin is also possible.
I had an RP in early 2018, Gleason 4+5 but fully organ-confined, PSA undetectable for two years, then took a crazy PSA holiday for three years until one year ago it was measured at 7. One year later, it's ticked up a bit but not drastically...now in the range of 9.
I don't think I fit in the category of "refusing treatment." Maybe more like playing for time. Hopkins RO recommended the whole nine yards but URO disagreed, believing radiation of the prostate bed made no sense with a PSA as high as mine.
So Hopkins MO enrolled me in a study at the National Cancer Institute in Washington where they do biannual PSMA-PETS to check for progression of the disease, if any. My scan in June showed no change from December...only one "mild" hit in the prostate area that actually got slightly "milder" over the course of six months.
I feel good...no symptoms...and intend to ride with this until the scans light up...and then think about what I want to do. I mean, there is no cure available at this point anyway.
I'm aware my mindset is in the minority and would never urge anyone else to adopt it as it might be very wrong for them. Hell, it might be very wrong for me. However, having almost reached the age of 70 and blessed so far with a very fortunate life, I have no complaints...whatever happens.
Thank you for your response! The fact that you’re thinking for yourself with YOUR life is what matters.
memorial sloan has a nomogram for men in Europe who refused treatment...... I believe they call that nomogram the life expectancy nomogram for men with PCa.
He is , most likely, an exception. DX with PSA in the thousands usually means metastatic. I know you are saying we need to know about exceptions, but it’’s pretty well known that with a PSA so high, even with treatment, life expectancy is less than people with a low PSA at DX.
I would say the answer maybe rather simple. After their initial diagnosis they make the decision to not proceed with treatment. Consequently from a medical point of view they simply vanish until the symptoms become to much and after some years they seek to see a doctor again.
IMO the primary reason for this is lack of funds or no medical insurance coverage.
You are NOT going to like the answer for my rationale for no trial. MONEY!
Simply there are limited funds TO DO THAT KIND OF RESEARCH.
Just to give you another example. The USA is experiencing a shortage of doctors and it is forecast to get worse. Here is the money issue. Residencies after MD school are funded by Medicare. Congress has not seen fit to add additional funding to increase the number of residences for even primary care. Without residencies your MD diploma is worthless. You can not legally practice medicine without doing a residency in the US after medical school.
So should congress fund the research you are suggesting or fund residencies. Looks to me the priority is arms shipments but what do I know. To big an issue for me to worry about. I will be dead in a few more years. When is the last time you heard a representative or senator address INH funding for research or the upcoming doctor shortage.
I actually like your answer. What else I like is that you didn’t include fear mongering into your answer. You admitted that these men go on for years until the symptoms are unbearable which I agree. The way that most talk about this disease is, you’re diagnosed and if you don’t get immediate treatment, you will be dead in two months & I just find that hard to believe. I think that fully contained, makes sense to immediately treat OR someone that has unbearable symptoms BUT to asymptomatic PC patients. That’s where I find it difficult. I’m not saying wait til your bones are filled with Bone Mets but depending on age, a year or so to take care of things that you weren’t prepared for, take a couple of vacations etc BEFORE entering the horrible relationship with ADT.
From my Algorithmic Systems tool:
“Yes, it is generally true that many men who live into their 70s and beyond may have prostate cancer, but they may not die from it. Prostate cancer is often slow-growing, and many men may have the disease without experiencing significant symptoms or health complications. Autopsy studies have shown that a substantial percentage of older men have prostate cancer at the time of death, but it may not be the cause of death.
However, it's important to note that individual cases vary, and some men do experience aggressive forms of prostate cancer that can lead to death. Regular screening and discussions with healthcare providers about prostate health are essential for managing risk and making informed decisions about treatment options.”
Very interesting question and topic. I would love to see the results of such an inquiry.
Myself, I was dx'd over three years ago with a PSA of 1400+ with 1 scanned viable local node metastasis, but zero symptoms and felt well with lots of energy. For the last three years of 0.04 PSA tests I have endured all the hated side effects of Lupron Monotherapy. Knowing what I do now, I most probably would never had initiated medical treatment. I have recently discontinued the Lupron treatment and will see the results.
like one person said, it is all different. I had a PSA of 4.2. My biopsy showed 9 out of 12 samples with high cancer. The PSA test works on proteins made by prostate. Some times the cancer can block the protein skewing the test results. Oh and my cancer has moved to right lymph node. My oncologist said i am stage 4 A. It is all different.
I don’t discount that there aren’t aggressive prostate cancers with low PSA’s. Just as there is high PSA’s that are not aggressive.
However, the question still remains… let’s take away the PSA… stage 4 cancers… Bone Mets throughout their bodies… but no symptoms, routine testing, and three years later dead after treatment. Why isn’t anyone asking the question if we left them alone, would they still be alive?
Im not the type to just take the doctors word, I critical think for myself. When asking doctors these questions, the responses are scripted. “We’re making advancements in our treatments but have a long way to go OR it will be a painful death if you do nothing.” Well doc, how long will that death take? “I’m not sure, but I want to be having a conversation 20 years from now.” Do you see how they did that?
My doctors have all ways told me, it is my choice. I could choose surgery , radiation, hormone therapy, ect. They give you their educated opinion and you can take or leave it.
Sounds like you have great doctors. My Urologist has been pretty aggressive towards surgery. I’m sure it’s because I’m in my 40’s but QoL is extremely important to me so if that’s 10-15 good years vs 20-25 eh years, I’ll take 10-15 years. Thank you for your feedback.
I would be very interested in the answer as well!
Above is my PSA over time, usually taken every year. As you can see, there was a big jump over 2 years (I missed one year due to Covid). After the 12.7 PSA I was diagnosed with Gleason 9 (4+5), T2c/T3a PC. That had probably been growing over a year. I've had RT to the prostate, lymph nodes and prostate bed, and am on Lupron. Hopefully it is cured. My PSA is currently <0.1, undetectable.
I'm going from memory on this. I had Gleason 4+5......PSA approx 10. .....clean PSMA PET and MRI found tumor in prostate. When I used the MSK nmogram for such men who had RP, it gave me the 10 or 15 yr. PCa death rate. I then put my data into the life expectancy nomogram, for men who refused initial RP or RT....... I'm not sure if such men later began ADT after metastasi confirmed by bone or CT scan. So, the men who refused treatment had approx double the PCa death rate compared to the men who refused treatment. Something like 30% vs 15%. I chose to risk treatment SEs , but went with radiation plus ADT vs surgery. Had some SEs during radiation......primarily diarrhea-like BMs......but otherwise nothing worth mentioning........hourly sleep-time bathroom trips didn't help with sleep during those 28 days of RT. Now my only SEs are some but manageable hot flashes from the ADT..... I am most worried about increased risk of bone fracture, as I started ADT already borderrline osteoporotic!! I'll never know whether or not RP would have been the better choice for me.
Docs advise treatment because they kknow that treatment increases survival....but how significantly is your question I believe. Have you asked a Doc(s) to quantify the benefit in probability terms????? Be sure to check out those MSK nomograms. The younger you are, I'd guess the more benefit from early pre-metastatic RP or RT.
Thank you for that information as well as the details of your story. Life expectancy calculator. UCLA has one that’s similar. In my category, there would be 16 that would die in 15 years and 7 that would die in 10 if left untreated. The downside is they do not give predictors for metastasize or lymph node involvement. Here is the kicker, from most of the literature that I’ve read, for metastasized PCa outcome is the same rather treated or left untreated. Treatment isn’t proven to extend life. From what I’ve read, treatment is to lessen symptoms rather than to extend life.
ADT and other treatments DO extend life expectancy..... do you have a study that shows otherwise?
I’d like to see a study that says that those treatments are to extend life expectancy. What I’ve read is those treatments are for men with extensive pain & it is meant to improve QoL not extend life expectancy.
Let me know if you fail, using Google, AI, and /or pubmed.com, to find past studies showing the increased life expectancy using ADT, abiraterone, etc. Along with that, QOL is improved......compared to the possible horror of end-stage disease.
If you spend at least an hour searching and failing to find such a study, let me know and I'll review the studies.
I’ve found studies when there is “extensive metastatic cancer.” I agree that when their is symptoms, their QoL will indeed be improved. But my original question is about men who’s “refused” treatment? What were their outcomes? Why aren’t there any studies?
Did you look for studies showing outcomes for men who undertook treatment with ADT after either initial diagnosis showed metastasis , or intial diagnosis showed local PCa only, the patient had initial local treatment with RP or RT, and then later scans showed metastasis, and then ADT was initiated, or not
ADT efficacy was discovered MANY years ago, and the efficacy was based on the encouraging results compared to results before the advent of ADT. So, you might Google " original studies of ADT for men with prostate cancer". Do you think Docs are lying to evryone???
what treatment are you taking for the osteoporosis? Xgeva ? What dose ?
I don’t have metastasis
I have a prescription for 12 weeks of Fosamax...a bisphosphonate. However, have not yet started...still reluctant, probably unwisely so?
I read some of your posts here, and know where you are coming from. Maybe I am one of those outliers looking for alternatives and personally might be a human guinea pig. I plan on to keep posting here, regardless of my outcome even though one of my threads was even deleted (Thread was about Wiley publishing deleting a bunch of faked/false medical studies) and was requested via DM to move over to the AS forum, because I am not "diagnosed" stage 4. I might wait til my PSA is 100, then decide to do something, who knows.
A friend never tested then had discovered when at PSA 711 about 10 years ago- issues urinating so the Dr's insisted on immediate surgical removal- now he regrets that decision and wasn't informed that his sex life was over- sure he is advanced age now at 80 no mets to date afaik. His younger brother 60's though had PSA 158 on the other hand, had lots of symptoms, blood in urine, metastisized and he lasted 2 years Dr's. said go to hospice after a year when the 158 discovered. Both were in the most advanced clinics on west coast of California.
All the reading here and elsewhere everybody is different, you will find the same I believe as all the variables as BMI, diets, exercise, genetics, etc are so hard to compile.
I had a full blood panel in 2016 just for the heck of it. No idea about "high" PSA when I was 56 years old, overweight and my PSA was at 6 but I ignored it (glad I did!!!!!!). I did nothing, lived my great life and not even read anything about it until this past year. No symptoms except aging issues, abit lower libido mostly for 8 years where it crept up. Had I researched and got sucked into this SOC, I might not have had a great past 8 years now nearly 9 years, symptom free! Another random check up in Dec 2023, PSA was 21 by one lab, rechecked with another lab a week later after no sexual activity for a week and went down to 17.9. Then I became really, really stressed out. Searching and reading day and night. No easy solutions without dire consequences to my QOL.
3 months later was still stable at 17.6. This past year lost 50 lbs, went on complete diet overhaul per various recommendations, supplements courtesy of some helpful members here, started exercising walking daily. Lifted weights and hurt my arm, so quit that. Then a few weeks ago re-checked and PSA bumped up to 25. I might now even be stage 4, with ECE now, who knows. Still no biopsy, no real symptoms, life is normal and refuse to be damaged by SOC of ADT or Surgery and a terrible QOL.
My point is that I went from 6 to 25 in nearly 9 years!. I have learned the risks, and I am somewhat informed. If you look at the PROTECT study- make your own conclusions.
nejm.org/doi/full/10.1056/N...
"Death from prostate cancer occurred in 45 men (2.7%): 17 (3.1%) in the active-monitoring group, 12 (2.2%) in the prostatectomy group, and 16 (2.9%) in the radiotherapy group (P=0.53 for the overall comparison). Death from any cause occurred in 356 men (21.7%), with similar numbers in all three groups. Metastases developed in 51 men (9.4%) in the active-monitoring group, in 26 (4.7%) in the prostatectomy group, and in 27 (5.0%) in the radiotherapy group. Long-term androgen-deprivation therapy was initiated in 69 men (12.7%), 40 (7.2%), and 42 (7.7%), respectively; clinical progression occurred in 141 men (25.9%), 58 (10.5%), and 60 (11.0%), respectively. In the active-monitoring group, 133 men (24.4%) were alive without any prostate cancer treatment at the end of follow-up. No differential effects on cancer-specific mortality were noted in relation to the baseline PSA level, tumor stage or grade, or risk-stratification score. No treatment complications were reported after the 10-year analysis."
You and I are on the same accord. What are your thoughts on the Biopsy itself? Do you believe once biopsied, it will spread?
I have read about what you mean by spreading which the medical community seems to call "seeding". Maybe depends on needle diameter, depth of the incision to extract via needle biopsies. But supposedly according the "literature" and "studies" is supposed to be rare. I have spoken to several Dr's who believe it is low risk. But is it a low risk? I simply don't know of any studies yet I have found about "seeding" and the risk of it other than with the liver as stated below which may or may not have started the mets process, which I don't have a reference but read that somewhere.
I have (2) friends who had liver cancer, both had the biopsy and it was downhill from there. One had 1/2 of his liver removed for $150,000. cash (No insurance) recommended by his brother- and he was an MD.... he died soon afterwards- could have given that to his orphaned sons instead of the hospital. Recently another associate- with liver tumor- biopsied and he died a couple weeks ago. Neither were prostate. Did it metastasize because of "Seeding"? Who knows.
I have been very reluctant to get stabbed with a needle and damaged, but likely will go ahead soon. But not this stupid old random 12 - 16 pokes they have been doing for years. If you think about it, there are micro mets, that are mentioned. There are Dr's who are against needle biopsies.
Have you seen Dr. Ablin's (PSA Inventor) talk?
youtube.com/watch?v=lTjs0K-...
I like some of what this Dr. talks about diet.
drleonardcoldwell.com/2023/...
Very few men who have prostate biopsy are permanently "damaged". Where id you get that idea that they are??? To reduce small infection risk, ask for transperineal biopsy.
Or, do nothing...it's your life. You are right...the odds are that something else will kill you before PCa does.
"Very few" = it could be me, or you or another guy. TP does not have same risk as TR, I get it.
I am seeking an expert and hope for the best. Blood in urine that lasts, hitting one of the nerves in front the controls erections... ugh... fishing needles around comes with risks. Sure it's unlikely perhaps, but with that rectal 16 core random biopsy still being performed it sure seems backward and such changes to TP are slowly adopted in USA (Now TP read standard in say the UK) according several things Dr's have said and written. I get why it is though, it's easy access that way, done for years and for corp insurance profits who doesn't give a $hit about you and your health.
All of our Docs do "give a shit" about our health.......I guess you may need to find new Docs. Soory for your bad luck in the past. My friend's daughter just completed her MD program.....whata grind. I know her, and I'm sure she would "give a shit" about you, were you to be a future patient.
Yes, all medical treatments carry the risk of SEs......so you must balance those risks against the risk of doing nothing. There have more than a few metastatic men on this forum who are/were pissed about a Doc who was not aggressive in PSA testing and biopsying for PSA.
Thanks for the reply, but I never implied anything negative about Dr's in the above post. Re-read it: "for corp insurance profits who doesn't give a $hit about you and your health."
Please, don't twist this.
I said corporations (such as some of big pharma, some of corporate for-profit, publically traded hospital groups rushing Doctors during surgery, etc.)- but worst are insurance companies denying treatments or a lot of friction many of them don't give a $HIT.
As far as those metastatic men who are angry, they have a a right to be angry. But the ultimate decision and results are with the patient.
I get the anger. So am I angry, and likely will become, BY CHOICE metastatic if I do nothing and refuse ADT. I will not blame anyone else.
This forum has been very valuable as it has shed light on the awful QOL so many others have. My heart goes out to all of them suffering and the regrets. The stories here are incredible, and very sad many of them.
I wish you all the best in your situation.
Oh, and I just heard of an old acquaintance who decided against the SOC, and he just died. RIP John.
Cancer taking over your body is a really bad QOL. What are the QOL issues that are so terrorizing you? You don't "just die" with cancer..... I've seen the disease destroy people in my family....very bad QOL.
Best of luck in whatever you decide. Insurers are both for profit and non-profit.....either way, their cash flow needs to be positive. If folks want them to cover more, then they need to agree to pay more in premiums. Do you want them to cover unproven treatments????
Very simple. Being castrated is worse than death.
In what way? Yes, I'm castrated...chemically for now. Hot flashes are bothersome.....but a toothache is much worse.
Is it your concern about sex life?
Here are most details. Thank you for your response.
healthunlocked.com/advanced...
So, you didn't answer my question...what about ADT so terrifies you?
As to your linked post, TA offers an excellent reply to that post...
" Expect unendurable pain. Also expect fractures and spinal compression, which might be crippling, so that you spend the rest of your life in bed and a wheelchair. Unfortunately, I knew 2 guys who chose that route.
Those who choose medication live many years pain and fracture-free.
It is unfortunate that some men make the decision based on anecdotes on sites like this from those men who complain about side effects. Such men are apt to fall prey to misinformation from youtube videos. What about the hundreds of thousands of men who have minimal side effects and lead full and happy lives? "
What so terrifies you about ADT that you choose to live a much shorter life, ending in a horrific way?
I refuse ADT because I have enough of other multiple ongoing health issues I don't mention here, likely will cause earlier death. I am not the normal guy posting here, divorced and no interest in remarrying as I love my freedom, no grandchildren and not gardening, nor playing sports anymore or golf or jogging (None of which interested me in my life)- I assume many here are unlike that- while they go out camping- I go fishing for pink snapper.
Those supportive spouses likely are post menopausal anyway , and they accept their sex life is mostly over. I am very single, and very active sexually with multiple relationships at my age. I don't trust the T to come back to normal and lose say 4 years of better life now than 4 years from now when other equipment malfunctions and my libido drops off or ED starts. No interest in injections, implants , etc.. I will continue to live my life to the fullest, and have been doing so for nearly 2 decades retired (43) before official retirement age- so as I said before have been grateful for a truly amazing life and done just about everything I ever wanted including traveling worldwide all over. I am the opposite of most who work until they get 65. I was invited to Burning Man today by a sponsor, so call me a weirdo.
Good for you.....most here are older .......so sex no longer such a big deal...... and a true partner/wife understands.
Thanks for clarifying...I guessed that is your main issue. Best of luck.....we all need it, treatment or no.
I guess what you are saying is.......I'd rather have one yr of life with wild sex than 6 years of life with diminishment.
2015 at almost 65 I chose castration over ADT and was still able to have an erection - penetration - orgasm following the cryoablation of the right half of my GL10 prostate. One month after an experimental immunotherapy injection of Opdivo + Keytruda +Yervoy I began Cypionate(Testosterone) injections that peaked my *T* at 1,600ng/dL after injection to 500ng/dL(+/-) 2 weeks later before next injection.
2018 had GL6 and GL7 show on a Axumin scan in my remaining left half and had IRE on those. Just had 3 GL6's show on a Pylarify PSMA PET/CT in my left half and @ 74 now I'm watching my PSA. The PSA before scan was 12ng/mL following a *T* injection so I stopped the injections and now have PSA<0.1 ng/mL with T<2.5ng/dL the lowest given by Lab. Eating healthy and exercising and waiting.
I'm still waiting for that "Streetcar Named Desire" to hit me in the ass.....
Good Luck, Good Health and Good Humor.
j-o-h-n
j-o-h-n wrote -- "I'm still waiting for that "Streetcar Named Desire" to hit me in the ass....."
While you're waiting for that hit in your six it might just be the T-bone that gets you. 😂 Have a 3rd scoop on me. 👍👍
Thanks for the third scoop..............I'm still praying to get a T-boner.....👍👍
Good Luck, Good Health and Good Humor.
j-o-h-n
BINGO !!!!!!
Prostate Cancer PSA is detectible again
After Orgovyx
Typical PSA Level Decay Post-SBRT?
Side effect of Lupron
