PSA at Diagnosis: Why is it that so... - Advanced Prostate...

Advanced Prostate Cancer

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PSA at Diagnosis

maley2711
maley2711

Why is it that so many men are being diagnosed at PSAs exceeding 100? Is the annual PSA test insufficient?

86 Replies

I did not have an annual PSA test. My elevated PSA (950 in 2015), only came to my attention because I was in the hospital for something else. I also had no symptoms that indicated a prostate problem.

maley2711
maley2711 in reply to HB1966

Did your GP ever advise PSA testing??

Sorry Maley. I should have sent HB a private message. ✌🏻

maley2711
maley2711 in reply to HB1966

Or discus pros/cons of PSA testing????

HB1966
HB1966 in reply to maley2711

I have a yearly check-up. My health-insurance (I live in Germany) did not pay PSA-Test. You can only have an DRE - or you have to pay Out of the Pocket.

NOW I have my PSA checked every month...

HB1966
HB1966 in reply to maley2711

I know the "discussion" and my doc mentioned it. But .... I felt never sick... so I never did a PSA -Test (before my Initial diagnosis)...🙂

maley2711
maley2711 in reply to HB1966

of course the whole point is to find before feeling sick...did the Doc mention that?

HB1966
HB1966 in reply to maley2711

Unfortunately not. The doctor probably didn't think that you can have a PSA of almost 1000 at my age.

After the initial diagnosis, she was totally surprised. I don't blame anyone: the DRE was unremarkable at the family doctor. I was also confirmed in the hospital that the prostate cancer was not palpable despite the high PSA.

If I had said at the annual checkup to please measure the PSA and paid 20 euros (= $24) for it, the cancer would have been detected almost 1 year earlier.

There is no point in worrying about it. I was just unlucky. But in my entire circle of acquaintances ALL men were suddenly sensitized and had the PSA measured...

🙂

Hidden
Hidden in reply to maley2711

For those of us under 55 that decision was made by a bunch of know it all bureaucrats who decided the PSA test shouldn't be administered until 55. I was diagnosed only after having a discussion with my primary about TRT. He sent me to the Urologist who did a DRE and PSA. If it wasn't for that visit my outcome would have been entirely different as I may still be on the curative track. Only time will tell.You can read my bio for specifics.

teacherdude70
teacherdude70 in reply to Hidden

Vert good points.My opinion is that bureaucrats are actually two things: No it alls and bureaurats.

If it was their lives being put at risk of aggressive, no symptom, Cancer they just might know more than costs.

bluesnjazz
bluesnjazz in reply to Hidden

I don't know what "bureaucrats" you refer to, but I started having my prostate and PSA checked in my 40s because the common knowledge and medical advice at the time recommended it. Never heard and "bureaucrats" talk about PSA at all.

maley2711
maley2711 in reply to bluesnjazz

Did you ask for test.......or did your Doc advise without your asking?

Hidden
Hidden in reply to bluesnjazz

That is total BS. The general guidelines had been to start testing at 55 unless there is a family history. That is the common knowledge. Your knowledge would be uncommon.

USPSTF are bureaucrats.

========================

The U.S. Preventive Services Task Force (USPSTF) recommends against prostate-specific antigen (PSA)–based screening for prostate cancer in men age 70 and older. This is a D recommendation, which means the USPSTF recommends against the service because there is moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits. For men ages 55 to 69, the decision about PSA–based screening should be an individual one. This is a C recommendation, which means the USPSTF recommends selectively offering or providing this service to individual patients based on professional judgment and patient preferences because there is at least moderate certainty that the net benefit is small.

maley2711
maley2711 in reply to Hidden

Here is an excellent article from 2015 giving perspective of the issue of PSA testing>

aafp.org/afp/2015/1015/p683...

and here is John Hopkins latest.....

hopkinsmedicine.org/health/...

I suppose/hope there are supportive statistics behind these guidelines.....but for younger men, that is of no help when you are the outlier!! For such an important health item, I see no reason not to discuss this with men at any age. Why don't our Docs have handouts on things like this..big gripe of mine!!

another excellent review from Memorial Sloan Kettering......

mskcc.org/cancer-care/types...

They do advise a baseline PSA test ages 45-49

Hidden
Hidden in reply to maley2711

Read this regarding the guidelines for PSA screening.

renalandurologynews.com/hom...

It's now out of date but people need to understand how the government influences the practice of medicine at the primary care level and most of it is designed to minimize cost IMO.

StayPositive1
StayPositive1 in reply to HB1966

HB- I also never had an annual test. 1800+ at 48. I’m 51 now.

HB1966
HB1966 in reply to StayPositive1

I was 49, now I am 54. Right now my PSA ist scratching the 100. I am being treated with a study drug (MAK683).

maley2711
maley2711 in reply to HB1966

Thanks for all the replies. I suppose it will have zero impact, but I will personally mention this to both my GP and Uro. If they haven't already done so, maybe other PCa patient-centered organizations can do some lobbying on behalf of younger men who should start PSA testing earlier. I believe I have recently seen some reference to beginning at age 45...... I'll check what the NCCN guidelines say. PSA is a $30 test, so hopefully that is not what is influencing this? I think it is more likely avoiding the cost of many more biopsies that have a negative, ie no cancer, result. Standard biopsies seem to be approx $1000-$1500, and adding MRI doubles , or more , that pricetag. The simplest low-dollar improvement I see right now is tossing all the standard TRUS equipment and replacing with microultrasound. Specialization and more of an assemnly line approach to this testing would surely have a big impact on lowering costs also.

I got urinating problems when I was 44.. After some time went to the family doctor.. but it took half a year to feel my prostate and then a PSA which showed 88.... Then to urologist and had biopsies.. all 12 with PCa, broken out of capsule, aggressive cancer with mets too several bones, lymph nodes etc... Got ADT before I left the consultation... So.. it came as a lightning from a clear blue sky (danish saying).... So.. there are no such thing as an annual screening or similar here in DK and not even my doctor had a mind of PCa at a man my age...

Incredible. ...many Americans credit European nations with being MORE forward thinking on medical matters...perhaps we are over-rating those nations? Is Demmak more NHS-type system, or more private insurer model? No matter the nation, seems many Docs missed men's problems introductory class??? These stories are amazing!!!

Last spring, after RALP and radiation I had a visit with my primary doctor specifically to thank him for doing the psa test since I was 45 years old. My psa at surgery was 5.5. My pathology after was 4+5. He gave me a chance. I told my sons that they insist on psa tests annually after age 35.

My son age 47 has a PSA of 2.4. That was about where mine was at his age. He does not seem alarmed. It would be nice if the US and the FDA allowed the PSMA scan for diagnosis NOW. Germans been doing it for years.

maley2711
maley2711 in reply to lewicki

Ask for a referral to an urologist....that is high for his age, as I believe you already know. PSMA isbest for metastasis, but a qualty MRI and reading is a very good start...unless you wish to go directly to biopsy, preferably including an MRI pre-biopsy. Just my amateur opinion, of course. I don't blame anyone for wanting to avoid the biopsy!!

lewicki
lewicki in reply to maley2711

Thanks. I had a German doctor explain what he thought of a biopsy. It turns the cancer from a pussy cat to a lion. Do not do them. DR. Friedrich Douwes St. Georg Klinik Bad Abling Bavaria.

maley2711
maley2711 in reply to lewicki

Can you please provide some actual scientific study that supports his view? So, does he use PSA? If he does, what next after an alarmingly high PSA?

lewicki
lewicki in reply to maley2711

Hi, this was a statement he made about 22 years ago when I did Hyperthermia at his Klinik. He did use PSA Tests.

maley2711
maley2711 in reply to lewicki

He badmouthed the PSA test..but he uses that same test???

Yes, big kudos to your GP!! A shame that not all GPs are so diligent!!

Because too many men don’t get an annual physical and an associated annual PSA test. Simple as that!

maley2711
maley2711 in reply to leach234

No doubt that is one big reason. What can we do to change that...I have been guilty myself.

leach234
leach234 in reply to maley2711

When I was in Australia recently they had reminders at the urinals in the Sydney airport reminding men to get tested!

maley2711
maley2711 in reply to leach234

good idea.hopefully they also posted number of PCa deaths annually.

"Is the annual PSA test insufficient?"

Many of us had regular PSA tests a long time ago. But during what I think was sometime in the 1980s to fairly recently, the standard practice changed. I distinctly recall my primary care physician asking, "Would you like a PSA test?" I said, "That's up to you.." He replied, "No, it's up to you." He went on to explain the new thinking that because of uncertainties regarding low PSA numbers, unnecessary and uncertain biopsies, likely slow cancer growing rates, and a bunch of other reasons, physicians are now encouraged to discuss the option of forgoing regular PSA tests with their male patients.

So, based on my stupid reasoning that cancer was uncommon in my family and an unnecessary biopsy would be pain in the ass, I said let's skip the PSA test. Fast forward to Jan 2019 when a MRI showing a met on my spine motivated my first PSA test in many years: 111.

I'm sure I've screwed up the dates and maybe some facts about the history of regular PSA testing policies. So I welcome corrections.

maley2711
maley2711 in reply to Gearhead

I believe the timeline is more like.....sometime in 1980s PSA started to be offered as PCa preliminary test, then approx 2012 a government body on preventive testing gave the PSA a D grade and basically advised against it ...perhaps with exceptions for certain men? Many urologists raised a ruckus, and in approx 2017 the government task force changed the grade to C, and suggested henceforth physicians discuss the test with men and help the man to decide, based on pros/cons discussed. I never had that discussion with my GP(female), but she did offer the test, and I had read about negatives...so mostly I skipped the test, but did have one in 2014 with PSA 4.1(kaiser's guideline for my age 65at that time was 4.5, so wasn't referred to urologist?). I didn't have another pSA until 2 years ago.....PSA 7.5, and 2 years later still 7.5(kaiser's guideline at age 70+ is 6.5)...I was referred to urologist at age 70 when PSA 1st measured 7.5, a later PSA was 6.6, and recently measured 7.5 again. I asked for an MRI, and the news was not good!! I was unable to complete fusion biopsy..too much pain just from insertion of wand.....now I'll be scheduled for biopsy WITH sedation. Evidently i"m one of those rare men who cannot tolerate pain from the TRUS probe...at least that is what 2 Docs are telling me. I had asked for sedation originally...evidently I had a premonition of what would happen?

I believe we are lucky to have PSA as biomarker for possible PCa, but there certainly are negatives when so many men undergo biopsies and the result is a negative biopsy. From my understanding, there are no equivalent biomarker tests to find other cancers before they metastasize..though women have the mammogram which seems to be finding many early stage cancers....we need something whose cost is similar to mammogram cost yet more specific than PSA. Perhaps men should be put on a schedule for receiving microultrasound imaging, but not biopsy, when there is any question at all about the man's PSA level at a certain age.

Gearhead
Gearhead in reply to maley2711

maley2711: Thank you for your correction to my very inaccurate PSA policy-change date guesses and your more accurate summary of the sequence of events.

One significant thing we (and I suspect many other men in our age range) have in common is that we decided to skip PSA tests when that was an option offered to patients. Of course in my case, I now regret that decision, because a timely PSA test might have enabled diagnosis at Stage 1 rather than Stage 4.

I'm sorry that your biopsy was problematic. I hope your sedated biopsy goes smoothly.

maley2711
maley2711 in reply to Gearhead

Thanks Gearhead!! Yes, 2 urologists told me I'm just one of a thousand men who cannot tolerate the probe.....call me a loser!! Maybe others have that severe pain, but just "grin and bear it?" Felt like Shaq was holding and crushing my forearm, but stretching instead of crushing pain! I couldn't imagine enduring 15-30 minutes of that type of pain?? I had no problem with digital exams?? Minor non-bleeding hemorrhoids..but many men have those and complete biopsy!! So frustrating.....then again more time with QOL before debilitating treatment?

Yes, it is insufficient once something starts going wrong. My husband had it checked every 6 mths even before cancer was diagnosed.

Individual PSA results are unique to each man's case, and they are very much not a useful indicator of the pre-Dx nature of the disease, or of potential treatment options, or of prognosis. You can find examples here of men whose PSA at diagnosis was around 4, who have had aggressive disease, and cases of those with PSA in the thousands and more, who have had not much more aggressive disease. My PSA rose fairly quickly from 4 to 10, when I was taking Testosterone supplement therapy for low T and low libido, (can't be sure that TRT was implicated) then to 18 several months later, around the time I was diagnosed at stage 4 (1 met) and Gleason 8. Only symptom was BPH, and DREs and 2 prostate ultrasounds just prior to that were reported as normal. Prior to agreeing to a TRUS biopsy here, I had to pay for my own MRI in Buffalo (I'm Canadian) which indicated large tumors in areas of my prostate. I did this because I suspected Pca, but I could not get an MRI requisition here, and given the 65% or so accuracy of TRUS, I insisted on including the MRI data to guide the needle locations. I fully support PSA testing for men at 40, and even earlier for those with a family history. My dad died of Pca, which doubled my risk, and now my brother's risk may be considered as quadruple. Some informed members here believe that even before Pca has migrated from the prostate, ie, below a stage 4 Dx, and perhaps with Gleason score above 6, one should assume that Pca cells have potentially already begun to circulate in the body. and seek early advanced diagnostic scans which can identify small tumors which CT, Bone and less advanced scans cannot detect. I had to infer that the nature of the treatment planning suggested by my esteemed Canadian radiation oncologist, at a highly regarded Pca center, was a palliative radiation regimen. If I had not had the one bone met, there was an esteemed urologist who was more than eager to operate: neither option had any apparent curative intent. The long face giving me depressing, pessimistic five year survival stats and a second similar opinion from another esteemed RO at a different highly regarded center clinched my decision to commit to treatment at a center of excellence in the US, which offers aggressive treatment with curative intent, and very good outcomes. Most members here would agree that you must be your own advocate, seek opinions, and treatment at centers of excellence. I know that costs, travel, insurance coverage and the time required for treatment are significant factors in making these decisions. Hopefully, members here will offer constructive input for you. Best luck on this journey.

maley2711
maley2711 in reply to bigbassman

bigbass -

It sounds like you are not a fan of Canadian healthcare system? No clinic, hospital, etc would agree to do an MRI...even if paid out-of -pocket?? I imagine you had access to Toronto medical facilities...but no mRI was available? Limitation of Canadian healthcare. In the USA, usually insurers won't pay for pre-biopsy MRI.... I wqs lucky i that a large HMO facility here agreed and paid....I was exception to rule......most men don't even ask IMHO!! To have a fusion biopsy approved for coverage, I needed to file an appeal...in which I presented data showing that combined TRUS and MRI-targeted biopsy finds 25-30% more significant cancer than does standard Trus biopsy alone. Who want s to have a 2nd biopsy, when the 1st fails to find cancer!!

The financial folks run the numbers and evidently believe skipping initial MRI is not a problem...ignoring that men don't enjoy being told that biopsy was negative, cancer still suspected, and would you mind having a 2nd, even a 3rd, biopsy. No biopsy is perfect...but I believe the combined biopsy provides at least a 90% negative predictive value..quite likely even higher..but 90% is considered excellent in most aspects of testing. Like you said, standard biopsy is probably not more than 75% negative predictive value. In other words, combined biopsy much more "sensitive"....which is the goal of testing. Have you come across the use of newer microultrasound imaging...supposedly similar to MRI for detecting PCa...but MUCH cheaper after initial purchase of the equipment....approx $150k USD......pocket change these days!!!

We could have an interesting discusiion re comparing US and Canadian healthcare systems.....I suppose each has its advantages??

bigbassman
bigbassman in reply to maley2711

Yes, I'm up for discussion/comparison of US-Canuck health care issues. I could be ashamed to be impressed that you were aware of the fusion biopsy term. Most Canadians are not, and no one will even discuss it at my hospital, even though there is a specialist in that vey facility with great expertise in using the Artemis (fusion) biopsy system. I appealed directly to that specialist to consider doing my biopsy. Canada has the worst overall access to advanced scans in the developed world. You have to be a special case in front of an elitist tribunal to even beg for a basic PET scan, almost always rejected. And I have read and heard specialists here, claiming that the TRUS biopsy is the gold standard. Really? I am preparing to transfer my case to the best facility in my province, 2-3 hours away, because they have PSMA and other advanced scans & radio-tracers. I haven't done so before now, because my PSA level have been at the limit of detection, now more than 3 years post-treatment. Do I sound a tad resentful or bitter? Nahhh. Talk soon.

maley2711
maley2711 in reply to bigbassman

Do you have better access if self-pay..or is that even possible? Well, PSMA scans are still very difficult to come by here..though Axumin at higher PSA seems to be more available. believe me, the men you hear from here are a tiny minority of USA patients.....most just go with whatever the Doc says.....few would ask for pre-biopsy MRI, and seldom covered by insurance. When 1st biopsy fails to find significant cancer, them MRI will usually be covered as followu-up, along with fusion biopsy. Fusion biopsy equipment not available in many clinics....but can be accessed if willing to travel , if not available locally. I think Canada spends approx 60%, maybe less, on medical..but does the USA really have superior results..life expectancy, cancer control, etc? I don't know!! Of course, 1/2 of our medical is already government-insured...Medicare system, Medicaid system, Vet coverage, etc. A minority of Docs won't see those patients...low reimbursement. I suspect that US Docs have much larger incomes.....but tht alone does not explain the extra spending here. The wealthy have nothing to worry about, of course....same in Canada I assume?

The only reason why so many men are diagnosed with Psa > 100 is that they have never realized that some medical condition could come along and threaten their existence well before the national average life expectancy of about 80. They feel that shit happens to other men, not them, and how stupid they are. Millions of blokes are like this. So when I question a younger bloke about his Psa, he has no clue what it means and how important it is, so they end up pissing blood, and having difficulty pissing, and their semen flow has stopped 3 years ago, and finally they are forced to see a doctor which they really hate doing, and after a PsMa scan or a biopsy they hate paying for, they hate what local doctor tells them....... "Mr Smith, you have stage 4 Pca, and it untreated you may die within 2 years" Oh boy, what a woeful result while talking to a f----g doctor!

But when I got to about 50, and had moved from construction work to fixing ppl's audio gear in 1994, I began to meet many men and some told me about Psa tests, and these blokes told me how so many mates had died from Pca, but they had not, and that they had a regular Psa test and when Psa went to 3, doc organized a a biopsy and when positive they had PG cut out, and lived on quite OK with no further Pca bother.

They waved goodbye to having sex, but their wives had all stopped wanting any sex many years years before 60, so so becoming Feather Duster was OK and no need to be a Hot Rooster.

I watched 3 married blokes living in houses near mine die from Pca needlessly.

They would not have a Psa test.

Well, I saw my Dad and a sister both die from melanoma and ovarian ca at 60, and another sister survive getting Brca, so when was my turn going to happen? Psa went to 5 in 2009, and I had in-operable Gleason 9, at age 62, and I've had a long expensive fight ever since to stay alive.

If I had ignored Psa tests, the Psa could have gone to 100, with big bone mets et all, and that would have been much harder to fight.

So I was much more aware of Pca danger than most other men were in 1994. But getting yearly Psa tests did not prevent the Long Fight. Many other men did take Psa seriously, so when it got to 5, they had a Gleason 4, a tiny grain of rice sized tumour in PG and their RP was entirely successful because surgeon was highly skilled, and Pca had not yet spread anywhere. But I had Pca spread outside PG capsule all around it, and surgeon could not cut anything, so he took more biopsies, and sewed me up, without cutting PG out. I had ADT and EBRT and the Long Fight. I am now maybe fighting mets in bones that began before diagnosis in 2009, but they didn't show up in scans.

So I say to ALL BLOKES, if you have Psa > 2.5, book a date to see urologist, have a biopsy, and maybe PsMa scan, and if positive have RP asap, and do NOT try "watchful waiting" as a response. Get your PG removed asap. You do not need to have sex like you did at 45.

If your missus leaves you because of this, so what, find a new missus. A good lady of 45 won't mind you being impotent at 45 as long as you will be around for 20 more years at least, and you have found ways to be happy without sex like it was once upon a time.

But some surgeons are better than others and can remove a PG without cutting all or 1/2 the nerves wrapped around PG which control continence and erections AND orgasms.

A well done RP might leave a man able to be a Hot Rooster, but not cause any pregnancies, and he does not need ADT, so his testosterone remains nice and high. and if he cares about himself and a partner, he gets nicely fit and healthy with BMI 22, resting HR < 50, waist < 95cm, and keeps himself like this for next 30 years, and avoids diabetes and obesity and it is all what caring ppl do.

I missed having an active Rodger after 3 years of ADT and EBRT etc, so I just don't bother trying to get a partner now at 73, because not one lady wants a poxed up old man who might die in a year. OK. But I do like cycling around my lovely city of Canberra and I enjoy cycling 200km+ a week, despite being stage 4, but Psa has never been above 50 since diagnosis in 2009 when it was only 6. I am due for Ra223 soon. Who knows? maybe I live 5 more years.

Patrick Turner.

Patrick -

wonderful response...so the problem not just here in the states!!! Canberra looks like beautiful place...but a long voyage from portland , oregon !

Sounds like you may not have a very socialized medical system ...you mention big expenses for treatments and tests? At first I thought maybe you are British.....but I guess " bloke" is mor e Aussie than British?

Time for bed....maybe more later!!

Best,

dale

I am an Australian bloke, and if I had a missus, she'd be good shiela. I live in Canberra, in Australian Capitol Territory, which is small piece of land about 80km from our east coast within New South Wales, The Federal Government is located here to allow our elected Polly Tichanz to argue about what's good for us, but more about what's good for rich ppl.

I don't mind being here because the prevailing winds blow the smell of Government bizzness away from my house. To many other ppl in Australia, this place is very weird, and they don't know why so much dough was wasted on spoiling what was a good sheep paddock when it could have been cheaper to have a National Capitol in a suburb of Melbourne, or Sydney, but when the idea of having a nation federated states took hold, the elected idealists of late 1800s thought it best to have a separate place away from any state city and at least 80km away from coast so enemy battleships could not fire big shells at our Government.

Of course that concern became "A bullshit thing" because of aeroplanes and ICBMs, but here we are in a fairly handsome part of rural NSW.

When global warming gets going in a big way during next 300 years, all Australia's big costal cities will be drowned under 100 metres of water, and there will be a return of a very huge lake of water in South Australia, but there will be enough land for survivors of climate catastrophe to eke a living from remaining land, and this city and others on high ground won't be flooded.

At this time our medical system is highly socialized, and our Medicare pays for all that happens in our large network of Govt owned Public Hospitals, so my ADT and EBRT cost nothing. But for reasons associated with human greed, not all medical expenses are paid for by Govt, ie, the taxpayer, and anything for cancer that is not fully approved like Lu177 is not paid for by Medicare. But the PsMa Ga68 scans are partially paid for by Medicare and I have had 10 so far, at usd $500 each, and much less than what it costs elsewhere around the world.

If we did not have a Medicare, the doctors would keep us all in poverty with their outrageous wages for their work which often does not give us a cure for what we want.

But many here, mainly rich ppl, have paid medical insurance premiums all their lives so they can go to "private" hospitals to supposedly get better treatment than is available in a "public hospital". This means the private hospital management and doctors get paid huge piles of dough, and insurance companies also are rich and they laugh all the way to the bank. of course it is sometimes impossible to avoid going to these private hospitals because they often invest in the latest equipment or methods before the Govt hospitals "find the money" for big things like radiation gadjets costing maybe $8 million, made in USA or Germany.

I had 31grey of IMRT with Calypso method to my PG and 45Grey to two upper thorax mets in 2016, and price was usd $18,200, but Medicare paid usd $7,200, and the wealthy private hospital paid for my 5 week stay in Melbourne at a nice old lodge, and for transport to/from hospital to get radiated. The doc there said the salvation radiation

would definitely kill the remaining Pca in my PG which had been radiated in a local public hospital in 2010 with 70 Grey EBRT.

Well, my last PsMa scan result showed I still had some active Pca in my PG which by now would be a withered up mess of a thing after so much radiation plus effects of 6 doses of Lu177. I doubt the salvation radiation of 2016 had any effect on my Pca at PG, and maybe little effect on 2 mets, the first of countless mets to be seen in 4 more scans during following few years. Nobody knows if the small amount of Pca remaining in my PG will be dangerous in future by spreading, but it is making PsMa, so it shows up in PsMa scans, and its the only soft tissue mets which do show up, but that does not mean I have no soft tissue mets. I could have many, but they can't yet be seen in scans. So I might get Ra223, and even if that zaps all my bone mets, there would still be the original problem of Pca at PG, and mets in soft tissues could begin to be seen, and they could go to bones again after Ra223 has done what it can for now. The Ra223 is still a long way from being funded by Medicare, and last estimate of cost was usd $9,400 for each dose, and maybe 6 doses are needed.

What I would like to see is some effective and affordable immune system based treatment which teaches my good immune system to be completely unfriendly to my Pca cells, wherever they are.

Today is a beautiful day here, and I have clean up work to do around the house, and some bicycle maintenance work, so a full day to get on with.

I do like to talk to all of you.

I do know the Covid 19 crisis must be a huge worry for most ppl in USA and Europe, and elsewhere. But here, we are managing each outbreak of cases with local shut downs and so far less than 1,000 ppl have died from C19, out of 25million population since pandemic began. We have to hope we all get effective vaccines soon, and that this virus does not mutate to become far more deadly and contagious. Some Australian doctors are in Wuhan to investigate what happened there 13 months ago. I was amazed that they were allowed into China, because it is ruled by stern Communist Party, but despite their defensive bullshit talk they might have decided to let a western nation in to help them with a problem they could not fully solve themselves.

Patrick Turner.

Thanks Patrick.....would love to visit there and have a cold one with you! Yes, I was rather amazed re China allowing foreign scientists/Docs investigate the Chinese problem.

I guess we can't blame Docs per se for the incomes they are paid...they should definitely receive handsome rewards for all the schooling/training they took on...but how much is too much......I really don't want a Doc as my Doc if his primary reason for becoming a Doc was the big $$$!!! I'd guess that many Docs feel that they are underpaid.....comparing the value of what they do and what they are paid to celebrity actors, athletes, corp execs, lawyers, even some plumbers maybe?

It seems once diagnosed with metastasis, it is just a never-ending variety of treatments , none curative from my perspective, that the patient is offered, or can ask for. I am amazed at the seeming good attitude of some men here .....all kinds of treatment hell it seems, and still with chin up? I don't know if I will be like that....throw in the towel?

There's a wide variety of doctor attitudes to their earnings. Some are very good at what they do and happy to work in public hospitals for low ages compared to some of those in private hospitals run for profits, and their doctoring is not any better. I heard of one surgeon who charged 4 times as much for an RP as what one quoted for me in 2009, but this smart arse doc had this reputation for sparing all the nerves when he went to a PG to cut the darn thing out. I never saw a video of how he did it, but he was never short of patients lining up for his work. Once you realize that your diagnosis and RP was way too late to have avoided Pca spread, even if the Psa was low and Gleason score was low, then you have to face the Long Fight, and for some, its a short fight, they are soon dead, for others it goes on for 25 years. I really like being alive. So I usually have been able to ask my oncologist for what I want before I see him, and he refers me to another doctor who specializes in the treatment l want. I was one of the first few patients my oncologist referred to doc for LU177, and he doesn't often refer patients to Ra223, but I could see that I fitted the criteria so I should hear soon about an appointment to see doc giving Ra223.

Always look on the bright side of life,

Patrick Turner

Hey mate, thanks for your story. God bless and enjoy your beautiful Canberra.🙂

Congratulations on your 73 rd birthday Patrick-turner

Hidden
Hidden in reply to Patrick-Turner

BMI 22? That's a little too skinny for me. I'm shooting for 25 and that'll be difficult for me to maintain.

maley2711
maley2711 in reply to Hidden

BMI 25....need to lose 30 lb...OMG!

Hidden
Hidden in reply to maley2711

Where did you come up with that number?

maley2711
maley2711 in reply to Hidden

I'd need to lose 30 lb to hit 25 BMI !

Hidden
Hidden in reply to maley2711

Get busy then. Time is a wasting.It comes off 1lb at a time

maley2711
maley2711 in reply to Hidden

The only way it could happen is if I forego one of few remaining pleasures in life...my very small evening slice of pie? or the 1/2 doughnut in the AM?? or both? How sad!! No peanut butter? My dinner plate is 30-50% veggies.......plus salad, maybe 6 oz meat, cup or less of carbs. Is that extreme? Just the same stuff I was eating 20 years ago, and 30 lb less! I haven't lost my appetite. Seems metabolism just dived!! walk 30-60 minutes per day...5-6 days/week.

Hidden
Hidden in reply to maley2711

How about a very very small slice of pie and 1/2 of a 1/2 donut in the am?

Nah..your are correct about the pleasures of life. Get some strength training in your fitness schedule. Thats essential.

Patrick-Turner
Patrick-Turner in reply to Hidden

I am now about 78kg, and 1.85M tall, so BMI = 78 / 1.84 squared = 22.8 I lied, but I was 76kg a couple of months ago and was 22.2Kg

Its the same weight as I was between 20 and 30, and I could wear the same size of jeans now as I did then. The difference between then and now is that I have less% of muscle, and higher % of fat, and many muscles I do have are weaker because I am 73, and I have been chemically castrated since 2010.

Nearly all men I see over 45 have more stomach fat than I do. There are a few thinner than I appear to be, especially other keen cyclists maybe 30 years younger than I am,

only 43. But many men over 55 have become overweight, and many have a huge belly all because they have eaten and drunk too much, so their BMI > 30.

Many women here are also 20Kg+ overweight, and we have epidemic of obesity and diabetes, similar to many other nations where ppl do not have to do real work, ie, lay bricks, or work on a farm or down coal mine with hand tools, or as a postman who uses a non electric bicycle to deliver hundreds of letters each day. The average person now has plenty of money to buy food, and food for sale is everywhere, and the food for sale is laced with Fructose and fats and chemicals with much natural goodness removed, and ppl are brainwashed by advertising to buy more, and more. And then some more.

The whole of many ppl's existence is a life where they are made to feel anxious and inadequate, and insecure in a surrounding world full of threats. What is the result? People put another bucket of chips down the hatch, washed down with Coke.

Who has mastery of what size they are to be? I do, for one, but many just can't lose the weight they should lose.

In 2006, at 59, after a 12 year rest from cycling and building construction work, I was 102Kg, BMI - 29.8, and I could not wear the suit I bought at 35. I had terrible knee joint pain because I had congenitally bad knees inherited from my dear old Mum.

I had man tits. I looked horrible, and many women would have thought me to be repulsive, which would have been quite natural, because desire springs from having a good figure, and being able to walk a lot, and pay for things without debt worries.

But in 2005, I'd had a double knee arthroscopy to trim cartilages and by 2006 I felt so good I thought I ought to try cycling again, so I did, and I soon lost 20Kg of fat and gained muscle within 6 months, and then I kept cycling 200km a week, and by 2008, I cycled 52km along a local highway with numerous hills at average speed 32.6kph, so I was nearly as good as I was at 42, when I reached a peak during the time I did road races in the local Canberra cycle club. I'm still cycling 200km a week, or doing the equivalent of

that much exercise each week, except for a few times when Pca treatments and a double knee replacement operation forced me off the bike for a month.

But I looked real good at BMI 25, so this is never "too skinny" Having BMI of 18 might be skinny, like the freaks who race in the Tour De France.

Anyway, losing 20Kg was losing 44lb, or over 3 stone and I kept the excess off by becoming a little more fanatic about what I ate. So more green vegies, less red meat less carbohydrate and just not ever too many calories and I've continued to live as a committed long term athlete and I don't care if its a bit anti-social.

Ppl blame many things for being too heavy, especially their metabolism, a very vague sort of a thing to consider. Well if you don't metabolize food into heat or energy for exercise, then you get fat. So don't eat too much. Who is in control here? You and your mind, or your stupid stomach craving for junk?

It was a nice day with 3 good hours of yard work and bicycle work, and a nice swim at the end. Time to eat a bit.

Patrick Turner.

I applaud your exercise discipline and diet control....you are obviously now in much better shape than myself and probably many others here? How much time would you estimate you devote to exercise evry day? Sounds like much more than my 30-60 minutes, with the rest of day very sedentary for sure.. ..also you are probably pushing yourself much more during your exercise time.....I'm not setting any records for walk speed!! probably 2.5 MPH....don't know how that translate to KPH?

I do have one excuse....a wife who keeps me busy on things other than exercise .....yes, not really an acceptable excuse.

I'm 73, and have been cycling an average of 220km per week since 2007, so 13 years,and average speed now is about 22kph, so its 10 hours a week cycling time, so its 1.4 hours a day average, 1 hr 24 minutes. Then there's all the other stuff I do, mow lawns clip hedges sop, cook dinner, and other jobs and all without ant with to ease the load. I care for me, nobody else does.

I do cycle rides on 3 days of the week, longest have been 90km over last 6 months.

I rest between rides, and spend many hours on Internet typing here, and doing more pages for my website. The unfortunate side effect of sitting down so much is that I now have a blood pressure problem and I am trying now to work out what a safe dose of medicine with my local doc.

Your 2.5MPH walking = 6km per hour, and not too bad. Its 6km from my house to center of Canberra city, and when 30, I used to get a bus to town on Saturday night to have a few drinks and "check out the talent" aka check out the women who may have possibly made good wife. I never found a suitable one, only one unsuitable one, and I could not "keep her on the porch" but I won't bore you with horrid details. I'd walk home 6km in 45 minutes and be completely sober.

I worked in the construction business, and I raced on road bikes for 6 years between 37 and 43.

I doubt my general reluctance to sit still for very long did anything to make it less likely to get Pca which I see as a spontaneous corruption of DNA in the PG which is a little tiny gland as big as a walnut but soaked in testosterone, a sex hormone, which makes various human parts more likely to get cancer, like testicles, ovaries, breasts et all.

The urge to cycle about remains strong, despite some aches and pains die to old age.

I go a lot slower than a few young men who remind me what I was once when they overtake at 40kph and I can barely manage 25kph, but even if a man cycles at 20kph at 80yo, he gets a pile of health benefits, if he does not fall off the bike.

I broke an ankle badly at age 19, and it never stopped me doing a very physical life until I got to about 48, when I could not run any more. But I could cycle.

Knee troubles got bad as I aged, and in 2017 I has a double knee replacement, something that was a royal PIA, but I recovered real well, so only the ankle stops be doing long walks which I'd love to do if I could. There are many ppl who are social when they walk, but only crazy men like me who cycle, and I never ever met a lady keen on cycling.

Most men my age take 3 times the number of drugs I take for various conditions but some will live to 90 without ever doing much exercise.

I am muddling along, trying to bash the Pca mets as they grow big enough to be seen in scans, and Ra223 is next therapy, and I don't know what after that.

I spent all day doing a pile of work on 3 bicycles which all needed service work to get all things working like a dream.

There's never any day I don't feel I ought to be doing something.

Patrick Turner.

Yes, I feel that way also> but, there is always tomorrow..what's the rush...bad attitude?

What is your weather like there, as far as rain/snow frequency and temperatures year round? I'm guessing that Portland OR USA is not so pleasant comparably.

I live in Canberra, 300km south west of Sydney, and it may snow for 10 minutes once every 2 years maybe, and its the coldest city in Australia.But it gets real hot here, and during the more frequent years of low rainfall we get about 5 days with 40C, many days over 30C. Winters give us 100 frosts, but winter days allow cycling with max 13C common. Weather now is warm in a rare year of higher rainfall, but I have to cycle in early mornings.

Tomorrow won't always be there, so I like to get stuff done before the time comes when anything planned today can't be done later.

Patrick Turner.

Hidden
Hidden in reply to Patrick-Turner

I will be extremely trim at a BMI of 25. BMI is just a rough guide.The numbers are not gospel.

I know many on this site like to refer to BMI as if its a metric like BP, BPM etc but it really isn't.

Don't disagree with people carrying too much weight. They do.

Patrick-Turner
Patrick-Turner in reply to Hidden

BMI is a guide. But waist measurement is also a guide, but if you want to know more about yourself, you could always have fat and muscle % measured and fitness level measured. And do many ppl of 50 have low fitness and they just don't seem to care at all about it. I just can't be so care free.

Patrick Turner.

Hidden
Hidden in reply to Patrick-Turner

Me neither. They just opened the ice rinks here again after closing them due to a covid outbreak 2 months ago so I played ice hockey for 75 minutes last night and was probably on the ice for a good 50 minutes of skating. So in addition to working full time, I find the time to do 35 minutes of vigorous aerobic activity (> 8 METS) at least 5 times a week plus 45-60 minutes of weightlifting 5 times a week and now I'll be back playing ice hockey twice a week.

Once the mornings get back in the mid 40s ill start adding in 24 miles of trail riding 2-3 times a week. I take out the aerobic exercise on the days I bike ride.

I've been doing this for over 20 years more or less.

maley2711
maley2711 in reply to Hidden

I'm impressed..but would rather read something.....and lazy I guess.

Hidden
Hidden in reply to maley2711

Funny you responded with the reading because before I go on my bike ride I need at least 2 cups of coffee to get awake and motivated. I read my financial news first thing in the morning.

Patrick-Turner
Patrick-Turner in reply to Hidden

Yeah, we have an ice rink here, but I only went once with a GF who was very good on ice, and I kept falling over, but on a bike it was different. Could a man sit on the ice all night and freeze his PG? Probably not. I have more work today. I think I got front Shimano 105 derailleur to work OK with Sora cranks, Sram chain. I wore out an Ultegra derailleur, its being brazed to fix it if the man gets any time, but he suddenly got busy because ppl coming back from summer holidays want their old motor vehicles fixed rather than buy a new one, because any big expense is to be avoided because our economy is now in recession, and the future is so uncertain. And it time I got back to always having 2 good road bikes fully functional so when a broken part is hard to get I can ride the other.

I have to s doc today again about BP, its been 205 /96 some days, and the pills he gave have not worked at all. I'm OK on bike though.

As we age, we want to go forward, but things pull us backward.

Patrick Turner.

Had never heard of a psa test before diagnosis. I switched my GP and he ran one when i had a UTI. First psa test ever came up 1230.

A good urologist would have been on this before it got this high I would think

I am 73yo and I have been tested yearly since 2001. 1.8μg/L to 4.23μg/L(2017).Then in 2019, my PSA started to go up from 6.8μg/L to 11.7μg/L then in 2020 13.7 then 16.7μg/L then 22.4μg/L .

Jan 29 2020 I had 12 biopies and 6 on the Right Lobe were G(4+3=7) Grade 3 and a pre-RT Scan showed Tumors in both lobes. Having Multiple Severe Chronic Heat Problems, I could not have RP, neither LBRT or HBRT, they put me right away on ADT.

April 4th 2020 Casodex 50 mg X 30 days and Eligard 45mg/24weeks which the clinician nurse screwup. I was supposed to be on ADT 2 months prior to VMAT-RT so my prostate would shrink but it went from 24.7cc to 45.83cc.

And Lupron Depot 22.5mg/12weeks X 2 (May 21st 2020 + Aug 24th 2020).

VMAT-RT 3Gy X 20 on 139.87cc (pelvic) in June 2020 so I probably will be Impotent with no Libido for the rest of my life.

Per-Hormonotherapy

= 1.76μg/L (2020/05/04), 8.58μg/L(2020/05/27), 0.18μg/L(2020/07/29), 0.03μg/L(2020/09/15)

,

Post-Hormonotherapy

= 0.01μg/L(2020/12/15)

Next PSA test on March 1st 2021.

Unfortunately, one cannot always rely on "experts" to do the best thing for the individual. In the USA many higher stage cancers would be prevented with a National Health Care system. Apparently (this is my GUESS) in Germany, the National Health Care System has decided to save money by substituting an exam which might more often detect a more advanced cancer (DRE) for one which might detect a cancer early (PSA) AND Dr's are not recommending one spend the small amt of extra $ to get the PSA test because (presumably) it might lead to add'l testing & work-up (& expense) for a common benign condition (BPH).

maley2711
maley2711 in reply to rscic

Seems you have given an anti-NHS argument...citing Germany's poor example!!! Seems to me we need to have more data that correlates extent of BPH with level of PSA..there must be some relationship at different ages.....measuring a man's prostate size should not be that difficult and costly using existing TRUS equipment? System seems to afford frequent mammograms for women!!!

With the wide use of the internet today, there seems to be little reason for not having a better system of medical education for our citizens. The site could be WIDELY advertised, and no one would have the excuse of ignorance when it comes to recommended medical testing, vaccines, etc. Heck, SS manages to mail me several staements every year...an NHS type system could surely do similar mailings to all citizens enrolled in an NHS type system.

BTW, NHS in Britain has now made pre-biopsy MRI the SOC....though they have not yet fully ramped up in availability and Doc education! I'm surprise re German lower standard?

I had no symptoms that jumped out and said anything was wrong. I spent 9 years after visiting a Natropath for general health visits finding a MD, clearly I wasn't trying very hard. During that 9 years I was active and losing weight and eating much better. I finally found one June 2019 and he asked if I wanted a PSA, not pushing at all, I said sure why not. He wasn't keen about giving me a DRE there and the last one I had was about 20 years earlier. The PSA came back at 156. I blame myself not utilizing screening that was available but I was ignorant of, and I thank my GP for catching where we did.

maley2711
maley2711 in reply to treedown

Yes, we men tend to avoid Docs, right? My wife just the opposite!! she is from Philippines, where average person has little or no medical care.....mostly pay as you go there, and millions have little or no $$$ for medical care.

One reason could be that the recommendations of the U.S. Preventative Services Task Force for Prostate Cancer Screening did not support very widespread, total population "screening" in their published recommendations in 2012, and to a lesser degree in 2018. As with many things in life, there were multiple factors to be considered, and pros and cons about many things, and costs vs. benefits considerations. As a person who was PSA tested normal in my 50s, and then not tested again until I had developed symptoms and had a ridiculous PSA of 5,006 at age 65 at initial diagnosis, I can certainly empathize across the spectrum.

Here is a link to full details of the most recent recommendations:

uspreventiveservicestaskfor...

For comparison, here are the earlier recommendations that led my former HMO to not giving me some earlier PSA tests.

uspreventiveservicestaskfor...

maley2711
maley2711 in reply to ctarleton

MY GP at Kaiser HMO did offer me PSA test after the D grade from task force......I had test in 2014 at age 65, but not another one til I reached age 70 two years ago...pSA rose during that period, and MRI indicates PIRADS 5...yikes!! Still, 3 PSAs in last 2 years have been stable...at 7.5, 6.6, 7.5> I have a 95cc enlarged prostate, and my lesion would not have been deected by a standard TRUS biopsy...it is in anterior/transition zone that is not normally sampled!! Good thing I requested pre-biopsy MRI!!! IMHO, all men should!! Kaiser uses higher PSA cutoffs for older men...I believe Mayo also does that. Good or bad???

Really interesting thread. Never got PSA until 67. went to doc sporadically so was not diligent but not a total slacker either. Asked for PSA cause freind was Dx with aggressive case. mfortunately Dx wit low vol low grade G6 and am currently on AS. Not only did the the beuracrats decide it was not needed(suspect money is the real reason) but a lot of guys do not want anyone tampering with their stuff. I have had some tell me biopsy will make you impotent. I have had 3 and have been able to get a rise. well maybe not like I was 18 but I am 67, but good enough to do the deed as I desire. Its criminal that so many GP dont make a stronger case for it. I am now a strong advocate. The probelm is not the test but the decision making process which can be complicated but as time goes more tools being developed. We all need to push for better cause it is our quality of life

maley2711
maley2711 in reply to Mufj

I don't believe the $$ for cheap PSA test was the primary reason the PSA test was not encouraged for several years..... the $$$ involved in resulting biopsies that have a negative finding may have been a factor. The actual reason given for the downgrading of the PSA test was that the pros, primarily the small reduction in PCa deaths, was outweighed by the negative of reduced quality of life for so many men who would nevr die of PCa anyway. Obviously, if 1000 men have reduced QOL, is that OK to save one man from dying from PCa? I don't have the answr, but i do believe many men would say...no, I'll take my chance and skip the PSA. I believe newer mortality data is showing that early treatment is more life-saving than earlier data suggested. I believ this is a complicated thing, and don't blame the task force that graded the test a D. There seems to still be a consensus that Docs are overtreating too many men, and at the same time undertreating others! The problem is determining just which cancers are very aggressive?? AS for Gleason 6 seems to be a big advance.......with the majority of AS men able to avoid treatment for 10+ years, or even forever!! Previously, those men were having RPs immediately, and lost QOL. Yes, some risk when choosing AS....but with diligence, can be minimized. Nothing good with any of the treatments!! My Doc is even talking possible AS for low volume 4+3, if that should be my diagnosis at age 72? with family history, and my own feeling of age-related deterioration, high probability heart will be my undoing by age 85 or earlier.

Mufj
Mufj in reply to maley2711

You right its not the cost of psa test but cost of biopsy and other procedures. I just think its thoughtless to recomend against a test that has a relationship to pca rather than reconsidering the decision makeing process. Recognize other factors effect psa and consider processes to rule out oyher causes. Someone with less than 10 psa may be in nebulous territory but ad you get over 10 and increasing probability of pca gets higher in its most treatable stage pca is not symptomatic. So without screening you at least doom many men to a lifetime of aggressive treatment with SE. Rather than 1 and done with hopefully fore most more managable SE. To it just defies logic for people with expertise. But then hindsight is 20/20

What you don't know will hurt you.....

So I get a call from my doctor and he says to me: "Hello handsome, I just want to let you know that your PSA spiked from a 3 last year to a 4 this year"

My response to him was "What the fuck is a psa?"....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/16/2021 6:33 PM EST

maley2711
maley2711 in reply to j-o-h-n

at least he was checking....evidently more than many Docs did!!!

j-o-h-n
j-o-h-n in reply to maley2711

Funny you said that...... cause I had just switched over to him from my regular GP who retired.... I think my original GP was asleep at the wheel.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/16/2021 6:46 PM EST

Urination problems for awhile-GP said “your blood pressure is borderline-we’re not worried about your prostate. Let’s get you on meds for the BP” Eight months later-blood in semen. DRE, UROLOGIST says it’s prostatitis, antibiotics, no PSA test! Six months later, different urologist, thorough DRE, “very large prostate”, PSA 1036.

maley2711
maley2711 in reply to Largell

Definite malpractice by 1st Doc.....what a sorry state of affairs!!!! I would love to hear the excuse??? and folks wonder about our skepticism about Docs?

HelloAccording to PSA blod test ,the hospitals and their Dr.s in sweden they have the monopol,ofcourse they decide and you can't do nothing,But now there is a private Lab.you pay 25us dollar and you can check your psa if you like every month but i'm doing every 2 - 3 months.

I'm happy for that.

George

Because of family history I was getting an annual PSA test for nearly 30 years and got my first biopsy at age 56 when PSA hit the magic number of 4.0. Bam...GS9 and metastatic right out of the gate.

So I recommend anyone with family history to get an annual PSA. Wish they would permit a biopsy earlier at, say PSA 2.0.

If no family history I don’t have an answer for you, sorry.

PSA testing is poor at detecting rare, aggresive cancers such as intraductal carcinoma. My PSA went from 2 to 216 in 13 months and I was widely metastatic at that point. Since then I've developed neuroendocrine cancer and progressed with a PSA of <0.01.

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