Many on this forum are diagnosed with advanced pca despite having little or no recognised symtoms.What's the case for more screening maybe I'm opening a can of worms but earlier diagnosis for lads on this forum would have been to great benefit
PSA screening: Many on this forum are... - Advanced Prostate...
PSA screening
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pd63
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For the members in this forum, PSA screening would have been beneficial. The image below gives a reason against PSA screening.
PSA screening results
Interesting how a good infographic drives home a simple point. It's easy to look at this and see their point that 1000 men tested only saves 1-2 lives. Case closed.
It's harder to look at the data and ask what really happens. First of all, I'm pretty astonished that 10% of men have biopsy-confirmed PCa. But of the 80 that needed treatment or active surveillance, how much life did they get to live from treatment vs. had they waited until they were symptomatic? I think that this casually dismisses what goes on between the 80 and 1-2 that avoid death due to PCa. How many were able to *postpone* death?
Great point
This is one of my biggest complaints about this argument. The argument against screening focuses on "harms" of overtreatment--anxiety, incontinence, sexual dysfunction etc. But when focusing on the BENEFITS of treatment, the only one considered is avoiding death. It is never considered that treatment MAY improve the quality of life for those who may ultimately NOT die of PC.
Well, that...and the cost of significantly increased rate of PC being ultimately being diagnosed much later, when treatment may not be as effective. I don't think the full cost of the USPSTF's 2012 "D" recommendation for screening is known yet.
in reply to TeleGuy
Case not closed. Not a simple point. Screening catches the disease early when it is treatable and even curable. When caught when patient is symptomatic it is an incurable disease presenting much misery and suffering. You have made the point of that ignorant and stupid USPSTF -- the ones who created the situation where more patients show up symptomatic.
This prostate cancer PSA testing chart is derived from work by the policy-making USPSTF body, around 2012, and is based on poor statistical reasoning and incompetant policy making.
The chart conflates two very different main populations : (1) people with prostate cancer confined to the prostate and (2) people with already metastasized prostate cancer. And it is this second group that is now paying the price. (There are other populations, such as people who don't have PC. This group is at some small risk of a false positive.)
From the very beginning urologists were strongly opposed to the USPSTF recommendations. And their predictions are now coming true with the appearance of large numbers of men where their first diagnosis of prostate cancer is where the cancer is already metastasized.
I was diagnosed a year ago with high-volume PC and metastasis to the spine. I had no symptoms -- except a growing backache. And my PSA was 1,700. My lazy doctor just relied on official recommendations. And yet all along there was evidence that PSA itself provides useful information. Instead though, a policy that ignorance is better than knowledge. Get your PSA -- what you do with that information requires careful thought.
(Fortunately I have enjoyed fantastic care and therapy. Triplet therapy has driven my PSA to "undetectable" and my overhealth, except for strong fatigue, is excellent.)
People diagnosed initially with advanced PC are the collateral damage of using population statics to decide how the screening for a cancer may be beneficial or not for a large population.
uspreventiveservicestaskfor...
The decision is left to the patients. Many patients may not know the test exists and doctors may not offer it. The cancer is diagnosed when symptomatic.!!!
Once you get prostate cancer, you basically have it for life.
Your goal is, with early treatment, to die from something else.
Death from prostate cancer is one of the worse ways to die that exists.
No one much talks about that.
As your bones start to disintegrate from the cancer, your nerves are set on fire... from which there is no end except death.
There is no amount of pain killer, no type of pain killer, that can come close to assuaging that pain.
I hope that is an adequate answer to your question.
Not sure what you intend with that simplistic answer, but by no means do all men who die from prostate cancer experience pain, and what pain there is varies as much as every other aspect of the disease.
My old man died from advanced pca 15 yrs after diagnosis his passing was relatively peaceful just needed some oramorph towards the end for some pain relief
No need to get snotty. LOL
It generally goes to the bone. That's how it kills. How did you think it kills?
That's where your nerves get pinched.
And there are few jurisdictions that permit the healthcare system to put you out of your misery.
There is a long detailed description by a Colorado Doc that specializes in end stage prostate cancer. Maybe posted 3 or 4 years ago here. Maybe a little longer.
That's where I got my information.
"Not sure what you intend..." I speak truth. Some people like it. Many people often don't. That's why the world is in the shape that it is.
I have to admit that I have no personal experience. But I got it from an authoritative source. And it makes logical sense.
Where are you getting your information?
I remember there was a lot of hostile, emotional denial in response to that old post. I guess people don't want to discuss or think about it.
‘Hostile, emotional denial’ of your words? You write so matter of factly, I almost see no point in disagreeing. But you’re wrong. So I’ll leave it there.
‘3 or 4 years old, maybe longer’ ago observations from one doctor becomes the basis for ‘I speak truth’ for you. Like magic. ‘Authoritative source’. Your source is authoritative! Well why didn’t you say so! . ‘Logical sense’, even better. Ridiculous.
Well then, stick to the topic.
Other than that doc's observed mechanisms of prostate cancer death....
How, and through what mechanisms does prostate cancer kill you, when it does kill?
Please share that with us.
The mechanisms are known. What is also known is not everyone has pain, and the degree varies. You can find this information easily with an internet search if you don’t believe it, it is not my job to do it for you. .
Individual testimonials of how it was at the end from wives, family members, friends etc are also abundant, and they vary widely in their accounts.
My contention was never that there is no painful death from Pca. Of course there is. Your contention, which you refer to as ‘truth’, is that it is ubiquitous.
It is not, and again your long winded insistence that it is-supported by actually copying and pasting the details from one source-does not make it so.
Of course some die painfully. Some do not. The success of drugs used to manage that pain are usually very effective, sometimes less so. To declare absolutely that it’s a painful death that no drugs can manage is irresponsible and wrong.
But you're alive, how would you know this?
"There is a long detailed description by a Colorado Doc that specializes in end stage prostate cancer. Maybe posted 3 or 4 years ago here. Maybe a little longer."
Observational data? Really? There’s plenty of observational data that says otherwise, if you want to go there.
Some people take pleasure in what they think is delivering bad news. For your sake I hope that’s not what you’re doing, especially if you’re unaware of it. I’m out.
"Some people take pleasure in what they think is delivering bad news."
And some can be so uncivil when they are able to hide behind a keyboard.
So London, what would you do to disabuse people from that habit? There is too much of it here to suit my taste.
My observation is when you see excessive or disproportionate hostility from someone, they are defending something.
"There’s plenty of observational data that says otherwise,"
Where may I ask. please. No need to be mean you know.
I will show you mine. Please either show me yours or admit you are disseminating false and misleading information, and misleading people in need of quality vetted advice.
Do no harm please.
XXXXXXXXXXXXXXXXXXXXX
healthunlocked.com/advanced...
What happens in the very end stages of Metastasized Stage 4 prostate cancer?
quora.com/What-happens-in-t...
Gary Larson, MD - Have Treated Over 10,000 Prostate Cancer Patient
I currently have a patient taking the equivalent of 3,500 percocets per month to control the pain from stage IV prostate cancer. (1) PEOPLE ARE FOND OF USING THE TRITE EXPRESSION THAT MOST MEN DIE WITH PROSTATE CANCER RATHER THAN OF IT. THIS IS WHAT IT CAN BE LIKE TO DIE WITH IT.
Prostate cancer preferentially spreads to the bones, although now that stage IV prostate cancer patients are living longer with chemotherapy and newer treatment modalities, we are seeing spread to visceral organs as well (lung, liver, brain, etc.). They also have more time to develop the conditions described below.
Bone metastases are usually asymptomatic when first discovered, but over time, they erode the healthy bone, destroying nerves, and causing excruciating pain. Men will often have dozens or even a hundred metastatic sites that each hurt just like a broken bone, not to mention compressing spinal nerves, causing pain in the entire distribution of those nerves. Some bones do break in the process.
Skull base metastases deserve special mention. Compressing the cranial nerves as they exit the skull base, may paralyze cranial nerves causing the inability to use the eye muscles, facial muscles or swallowing muscles. If one’s facial muscles are paralyzed, they can’t blink, which leads to keratitis and blindness (unless the eyelid is partially sewn shut - or weights are surgically implanted in the eyelid to allow it go down all the way. If one can’t swallow, they need a feeding tube (these men are fully awake and functional, but will starve to death without the ability to swallow food - not the situation where a feeding tube is placed to keep comatose patients alive, which is a completely different issue). Not being able to swallow saliva means they must spit 1–2 liters of it every day, or have a fistula placed so it drains out of their neck. Compression of the trigeminal nerves cause pain in the distribution of that branch or branches - it’s like having a toothache in all your teeth at once - or that same intensity of pain in the upper part of the face.
While cancer spreads to the rest of the body, it’s also progressing in the pelvis, where it started. Bladder invasion causes intractable spasms and a constant painful feeling of needing to urinate. A catheter becomes necessary - usually placed through the abdominal wall directly into the bladder, which is less uncomfortable than having it go through the penis for months or years. The cancer can grow posteriorly to close off the rectum, requiring a colostomy - or just causing death from peritonitis. (A colostomy doesn’t do anything about the constant feeling that you have a butcher knife stuck up your ass.) Obstruction of the ureters requires nephrostomies (urine draining out of the back - from where the kidneys are). A well informed patient may refuse nephrostomies and die a relative painless death from renal failure in the next few weeks or months.
What about Hospice, you might ask? Hospice is generally reserved for patients with a 6 month life expectancy - these men may live for a year or two with these problems.
Not all patients get all these symptoms, but just pick a few of them and imagine living with them for 2–3 years.
Many men who die “with” prostate cancer may have liver failure, bone marrow failure, heart failure, renal failure, etc. listed as the immediate cause of death on their death certificate. Listing these diagnoses as being secondary to prostate cancer may or may not result in them being counted as a prostate cancer deaths.
The 27,000 men officially listed as dying FROM prostate cancer last year may, in many respects, be the lucky ones. They have come to the end of living with it.
You can see why I support PSA screening for prostate cancer. 90% of the men who are cured of prostate cancer had their disease caught early by screening. Those who don’t are playing Russian roulette with fate described above.
It may be necessary to place a weight in the eyelid or sew it partially shut due to facial nerve paralysis caused by skull base metastasis from prostate cancer.
A nephrostomy tube placed due to kidney obstruction by prostate cancer.
Spinal fractures due to prostate cancer.
Aside: I didn’t mention the morbidity from treatment - living without testosterone for years, side effects from chemotherapy and a variety of newer side effects we are discovering from the newer drugs that are now available to treat prostate cancer.
(1) 320 mg of oxycontin per day + 240 mg immediate release oxycodone = 560 mg/day X 31 days = 17,360 mg/month - which is the equivalent of 3,472 Percocet-5’s per month.
EDIT:
Supplemental info from Tall_Allen
healthunlocked.com/advanced...
renalandurologynews.com/pro...
Thank you for your input. I feel much worse now.
There are other sites to go to make your self feel good. This one is to help educate yourself and others.
Actually if you utilize the information you will perhaps make yourself feel better.
If you you would like to here it, I can share with you my plan if I find myself in such a situation.
I'd like to hear your plan. Really depressing stuff there you are sharing, but unfortunately that will be the reality for some. My big concern is that I am going to be one of those. I've had more than a taste of what living in chronic pain is like and I don't see any reason to believe that it won't get worse in the time it takes me to die. And that could easily be a year or more after all treatments fail.
I'll share my plan and that's to use Medical Aid in Dying or Death with Dignity as it's called here where I live in California. The problem with that is you have to be within 6 months of death and I'm really concerned about what it's going to be like between now and when I get to that point.
So then there's Option 2:
Fly to Switzerland and join one of two organizations: Dignitas or Pegasos. These organizations offer Medical Aid in Dying to anyone who is terminally ill without the 6 month requirement. You have to be able to fly there of course and it costs around 12K plus expenses. The good thing about this option is that it's available to anyone regardless of where they reside. The good news is that you don't have to suffer. If there is anything I can do to prevent the kind of awful, painful death that is very possible with prostate cancer, I will do it.
Update: Just printed Dignitas membership application form. Applying for membership today. It can take around 4 months from when you apply to when you can get the assistance so I'm doing it before things really start getting bad.
As Barney Fife would say about the one bullet he was allowed to carry "It's better to have it and not need it, than to need it and not have it."
My personal plan is if I find myself in that situation, I'm going to give cannabis a try.
If that doesn't work, Im going to just refuse food and liquids.
That works very quickly I am told.
It's the one last thing you can control and they won't interfere.
I wouldn't expect much relief from Cannabis. It hasn't touched my pain so far and I expect my pain will get a lot worse before it's over.
To be honest, I've kind of had it with suffering at this point. As far as I'm concerned, I've suffered enough already, not signing up for more. And tough crap if someone else doesn't like it or agree with it. It's really unnecesary to put yourself through the kind of torture that's possible dying a natural death with PCa. Yeah, maybe you'll get lucky, but then maybe you'll descend into hell on the way out of here. I just have to consider how much pain I've already endured and that's with supposedly "working" treatments. What's going to happen when the cancer starts rampaging through my body with nothing left to even slow it down? Screw that. As soon as the poop starts hitting the fan, I'm outta here.
Dr Myers (who had a few thousand prostate patients) told me that:
(A) Prostate cancer cells have materially more cannabinoid receptors than non cancer prostate cells, so given the role of cannabinoids in the mamalian system, it almost certainly suppresses or promotes the grow of prostate cancer. It's unlikely to be neutral.
(B) His observation was that those of his clients who were most enthusiastic about self treating with cannabis seemed to invariably have the most aggressive cancer.
His conjecture was that the cannabis was promoting growth of the cancer cells, not suppressing it.
Once I am in hospice, I don't care.
Opiates have never worked well for me. Cannabis has a reputation for pain management. It works way different than opiates, so I will give it a try if I find myself in Hospice or near Hospice.
That's my thinking anyways.
in reply to EdBacon
At least you have that death with dignity option in California. My neanderthal state will never have it.
EdBacon in reply to
The Swiss options are better IMO and available to all. Of the countries that have it, the US is still the most restrictive, even though at least we have 11 states that allow it. Having to wait until the last 6 months could really be difficult and tricky logistically. The people I've met in California that have had loved ones who did it said they still suffered quite a bit before they were able to get and take the meds. As far as I'm concerned, once there are no more treatments available, it's time to check out of here and don't screw around with whatever time you have been so lucky enough to get. You might have to leave a little life on the table, but that's better than being trapped in a doomed, pain ridden body until the end.
People can comfort themselves and say "oh but those kinds of difficult, painful deaths are rare." That doesn't comfort me at all, I've had too much pain already.
No amount of pain killer how do you know this ,are you a medical doctor...
My then recollection of a many years old Quora article that I subsequently looked up and posted here. By a Doc with a whole heck of a lot of personal knowledge.
It says what it says. Denial is not just a river in Egypt.
My husband was screened annually. His most recent PSA had been 2.5. One month before his annual screening, he had blood in his urine. First thought was an infection or kidney stones. When those tests were negative, he was referred to a urologist and his PSA was 11.7.
MRI, biopsy, scans etc followed. 8 weeks to the day after his PSA of 11.7, his PSA was 72.8 and he started chemo. His bone scan showed extensive bony mets throughout his skeleton.
Some cancers are so aggressive that even annual screening isn’t enough.
Hadn't had psa check since pre covid, family history prompts the testing , so thought prudent to get checked last Sept, psa @ 4.2, just over threshold into " suspect", tp biopsy confirmed early stage pca, if my psa had been 3.9 I wouldn't have been referred for investigation but would still have the cancer I was lucky it was 4.2.I realise psa testing ain't perfect but in my case it was beneficial
So glad you thought to get it checked! I wish everyone would. Sadly, some PCPs are very resistant to ordering the test.
in reply to pd63
My PSA was only 2.7 when I was diagnosed. A suspicious DRE got me sent for the biopsy. I had to nag the PCP to do that. He refused to order a PSA test. He was a doctor at a medical school. You know, the USPSTF nonsense and all that. He wasn't allowed to order a PSA test. The urologist was very surprised that he had to order it. That's when I found out that it was only 2.7. The '4.0' threshold is no guarantee that you are in the clear.
My husband had family history and symptoms. His PSA still wasn't checked because he was 'too young' according to urologist. Cancer found during TURP to try to alleviate his symptoms.
it seems that increases in PCa that has spread is increasing since the task force recommendation. That is a red flag
Screening is more than just a PSA and DRE. It also concerns family history, symptoms, PSA velocity, etc.
The message I think is if someone has an elevated PSA, it should motivate further investigation into why the elevation. Whether repeat PSA, prostatitis, imaging, etc, I think it would be a dereliction of duty if a physician ignores that elevation.
The fact that once PCa is diagnosed, PSA is used for monitoring says something about the usefulness of the test with limitations. It is a data point that needs to be evaluated with other data points to make an informed decision.
The problem I have with the US preventive task force recommendations, is I suspect the task force puts too much a priority on cost savings, which if not done judiciously can end up pennywise and pound foolish
A few thoughts: I've seen info not long ago that cancer deaths in America have radically dropped - except prostate cancer. Deaths have risen 3-5% (sorry I can't remember the time window). The reason is said to have been a window of time when doctors were discouraging PSA testing for all the reasons above. It wasn't being found soon enough.
We watched the super bowl with friends who followed a similar path - elevated PSA which led to RP. He's fine, it was caught in time, no need for ADT. My husband after 9 years on ADT now has mets. I'm not complaining, I'm grateful for what time we have.
Until they develope a better way to detect PCa, PSA is the only window we have into finding it before it becomes deadly, sad though it is.
in reply to Tinuriel
There's the dread DRE. Many doctors and men avoid that.
Nugger in reply to
Thinking of training the wife up to do mine because this new doctor ive got is a non starter,had to twist his arm up his back to get him to give me one & get a psa test,what a joke!
once you have “symptoms” the prognosis is not good. Must catch this. Like any neoplasm ,before symptoms appear
Define "more screening". What is being offered to you?
I had no symptoms and my PSA was only about 3.4 at highest yet I have stage 4 prostate cancer. An astute urologist who did the worst manual prostate exam in history figured it out.
Please understand that almost the same percentage of men get prostate cancer and women get the same percentage of breast cancer. Does prostate cancer get a fraction of the research that breast cancer gets?
youtube.com/watch?v=ODV6mxV...
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 02/13/2023 7:56 PM EST
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