The refusal of GP's (General Practitioners) to test for PSA in the context of prostate cancer risk will eventually be revealed to be a scandal.
As we know now the refusal stems from a poorly reasoned and controversial 2012 US "Preventative Services Task Force" recommendation (ncbi.nlm.nih.gov/pmc/articl... ). The recommendation was widely adopted in the US and then copied around the world by national prostate cancer policy bodies.
In this context my doctor in Canada did the usual perfunctory annual DRE. But never a PSA test. And then with a growing back ache suggested "you have strained your back muscles". The developing back pain was actually because of cancer on the spine, not a side effect of a localized inflamed prostate, let alone strained muscles.
Ever-stronger painkillers were prescribed over the next 4 months. Eventually after begging for an X-ray, something showed up, indicating a need for - more detailed X-rays.
Finally, via MRI, I was diagnosed with stage 4 hi-volume metastatic prostate cancer and multiple compromised vertebrae and ribs and lymph nodes too, etc. A terminal diagnosis with severe spinal cord risk. My PSA was over 1700 (not a typo). Fortunately my brain scan was negative! Imagine my relief!
Apparently my cancer would have had taken years to metastasize to earn the "hi-volume award". Another way of putting this is to say that I enjoyed years of policy-driven medical incompetence and misjudgment, during which time the cancer grew in my prostate, eventually escaping in order to colonize my spine. The impact on my wife especially was heart-rending.
I'm very fortunate to have been treated at Toronto's Princess Margaret Hospital, with leading-edge triplet therapy, and have responded extremely well, and aside from bone mets have no organ metastasis and have avoided paraplegia (barely). Also my LE has gone from a year to maybe 5 years. At least it looks like I'll have enough time to get my affairs in order.
We are fortunate to live where we do. The quality and sophistication of care and the kindness of the staff at Canadian hospitals have made this journey much easier. Add to this the fact that all costs are covered under Canadian health insurance means none of the terrors and distorted incentives of the alternative south of the border.
But doing life expectancy calculations shows that this missed diagnosis will likely cost me between 11 and 17 years of life! (I'm middish-sixties now.) With my wife and children, one still in highschool!
Note added at later date: The loss revealed by a diagnosis of prostate cancer with metastasis is not only in years, but also in the quality of life during the years that are left. Metastases usually quickly and significantly impair one's quality of life. In my case I count the fact that I have only three vertebrae compromised as a blessing. No other major organs are affected yet. Nevertheless, even if my current metastases are stable for a while, I am still constantly at risk for vertebral fracture or impairment of the spinal cord. And I'm also learning about the major effect of therapy on one's energy level. And then there's the dread waiting for the results any new PSA test. There are thousands of stories to tell and some of them end up here in this forum.
The medical community and the media never tire of saying, "you can live with prostate cancer". But that does not apply to metastasized prostate cancer, not at all. There's probably a Pulitzer prize waiting for the journalist that documents the story of the 2012 U-turn on PSA testing.
I have to work very hard not to be bitter about this. The lazy, bad decision-making by Canadian health authorities, policymakers, and physicians is unforgivable.
Another Note Added Even Later (and also posted separately as a reply below too): I recognize that not being more aware of my own responsibility to understand prostate cancer risk is my failure. Those missing years of life are also my responsibility. I'm now working to improve my decision making and focus. Contributing to a broader awareness of the opportunity PC early is one thing I can help with.
P. S. - I'm reporting now, October 2024, 2 years after this post and two and a half years after diagnosis. Thanks to triplet therapy I'm doing quite well - I even am working part-time. And aside from ongoing fatigue, as I told my wife last winter, "I'm sort of normal now". She laughed and made a comment 😂 - and I thank heaven for my wife everyday ❤️
unfortunately my husband had the same mistreatment in the states ! 5 1/2 years of fighting the beast and we are losing the battle. We had a wonderful life and would’ve liked more time with the love of my life. But due to a Dr that didn’t believe in psa tests he is going to miss the next decade of his life. I tried to sue but the lawyer said it was standard of care according to the cancer society rules back around 10 years ago. Now I will be alone to witness my grandkids growing up. Colon cancer can be prevented why not prostate?
I have found that when it comes to health care you must be your own advocate. Sad that in Canada you are held hostage by the medical system. PC runs in our family so my brother and I started being tested at 45, thus my early diagnosis
I have always had good insurance and now on Medicare, never had problem with costs. I have had the benefit of seeing my dad go through this and followed his lead
Yes- that's wonderful! Those that are fortunate in the US who have a job that provides insurance or they have money to provide their own are lucky. Many have neither and cannot get care. This is not an issue in other countries. Very happy you have had good insurance- that's great! My husband and I are still Many years from medicare- I'm counting the days.
No where near 65, went on disability so I would have Medicare available to me. Hired a Medicare broker to find me best advantage plan. Where there is a will there is a way
I was working 6-7 days a week yet had yearly physicals. I never heard of a PSA test! Never! I had NO symptoms until 30 days before being diagnosed. And I had good healthcare thru my place of employment. Big business is running the show and they chose to tell doctors to back off on PSA testing in 2012.
Crazy doctors are everywhere I guess. PSA tests are one of those things you get like a colonoscopy in the 40 to 50 year old range. All my friends were getting these things done so i did to. My doctor was more than willing to do them. Sucks you got a bad doctor
Or to spare men from the shock of being diagnosed with a dread disease? You've got to be kidding. 30 days after I found out that I had advanced prostate cancer with a PSA over 800, I spent 3 days in the hospital getting blood transfusions to stay alive. My family was brought in to see me. There were no surgeries for me. The cancer had spread and was everywhere. That was a shock!! Overtreatment. How about a nurse coming ever hour to see if my blood pressure was dropping, wondering if I wouldn't last the night. That's a shock.
You missed my somewhat sarcastic point. Their attitude seemed to have been: Let's spare the old guys the shock of being diagnosed (early) so they can be enormously shocked when they are metastatic when they finally do get the diagnosis. Also penny wise and pound foolish. Let's not start treatment until treatments become super expensive, for lack of performing an inexpensive screening test. Sorry to hear about your experience with doctors that let you down.
The Cancer society was told to back off on PSA testing because of the expensive testing involved in diagnosing the extent of the cancer or possible cancer. (Look it up - 2012, 2013). In other words, healthcare insurance companies were losing profits due to added costs of testings.
Same in the U.S. -- had to beg my GP for a PSA in 2010, and after which he said forget annual PSA testing due to overtreatment, then in 2018 at 64yo had stage 3b PCa after I did a PSA test on my own.
Completely the same in the UK. Had a wellbeing check aged 50, told the nurse I had no health history as I was adopted. Nope, no one mentioned PSA test. Indeed no one mentioned PSA test after my first DVT in my left leg or after experiencing pain that stopped me running for 9 months. I had a scan at the local hospital and the nurse mentioned I had 'a few small gallstones, nothing else showing'.
It took a second DVT before the alarm bells went off at the hospital. My last but one conversation with my GP was him saying don't worry, 'you have just got varicose veins, lot's of us in our 50s have'. Oh, my PSA on diagnosis was 1,311.
Strangely I'm at ease and peace with what led me here. However, I totally agree that one day this will be a major scandal. As someone once posted in here, can you imagine the outcry if ladies were not screened routinely for cervical and breast cancer.
I understand in Europe men are also not routinely screened for prostate cancer but the Urologists are fighting for this to happen.
Actually, it's even worse in the UK than Canada. As well as no PSA screening, no DRE is performed unless you have symptoms. I had a "well-man" check-up at age 60 and neither PSA nor DRE was even mentioned. We have screening for bowel cancer (stool sample) from age 60 which is far less common than prostate cancer. Maybe one day this scandal will be put right.
Totally agree. No DREs performed at the 'well-man' check in the UK. I've actually never had a DRE. No MRI or biopsy either, despite widespread prostate cancer to bones and lymph nodes.
I make a point of educating all of my friends, advocate for yourself.
There is a video of Chris Whitty the Chief Medical Officer (UKs version of Anthony Fauci in the States) basically acknowledging the collateral of some patients being diagnosed as advanced, stage 4, because of not testing for PSA, to avoid 'over diagnosis'.
Agreed, even worse in UK. Presented with intense groin pain. Local GP organised PSA test which was returned as 7.2 GP advised false positive and did DRE. No further action. Nine years admitted to Hospital PSA 463. Recently sued GP. History reviewed by two eminent oncologists. Damages awarded - £150,000. The Uk system needs drastic overhaul.
Interesting. I had intense groin pain from August 2019 to diagnosis in May 2020, this is what stopped me running. One doctor was going to repair an 'inguinal hernia' even though this was not subsequently the problem. ADT resolved the pain along with Casodex.
I think GPs need an up-to-date list of symptoms to work off. Fair play to you for winning your case against your GP.
Holy crap. While this discussion has focused on PSA, I had to nag my new GP for a DRE. It got me sent to a urologist for a biopsy, which was positive -- Gleason 8. My PSA at the time (which the GP didn't provide to the urologist's astonishment) was only 2.7, which wouldn't likely have raised a red flag.
In Slovenia they do not check PSA. Because - so they claim - there would be many false positives and over-treatment. And if yiu are diagnosed at 74 or beyond, they do the calculation in their head - they take life expentancy and decide you will die with prostate cancer and not because of it. So they just put you on hormone treatment and ruin yours and yours family life.
I tell everyone I know here in the Usa, get your (or your husbands) psa checked. If your dr refuses to write the script pay $40 at quest and get your own.
"Indolent doctors hope your prostate cancer is also indolent."
Maybe this one is too biting I don't know, but it does capture a truth about the doctor patient relationship where prostate cancer is concerned. And features the word "indolent", used to describe cancer that is not progressing.
Not all states allow patient ordered labs, but that’s great advice. I routinely order my own labs at Quest because I like to keep a closer eye on some conditions than the doctors do.
My experience with the Canadian medical system is far different than yours. I too was suffering from severe back pain and frequent urination. My family doctor immediately ordered a PSA test and like yours it came in just below 1700. Unfortunately my PCa had escaped the prostate bed and, when diagnosed, I had widespread metastases to my bones. Thank goodness I had no soft tissue involvement but my initial prognosis was not good.
That was nine and a half years ago. Since 2013 I have had two outstanding oncologists (radiation and medical). They are both on staff at our closest Cancer Agency and watch me like a hawk. I have now had over a hundred PSA tests (roughly once a month). I know nearly every technician at our local lab and they all know me. I am currently enrolled in a clinical trial. All along my metastatic prostate cancer journey my wife and I have been treated by caring professional medical staff. I know I have been very fortunate and for that I am very grateful.
Thanks for your fantastic reply RyderLake! Your situation at nine years, but starting very similarly to mine, is very encouraging! And the idea of constant PSA monitoring is a wake-up (currently mine is <.01), but I'm not monitored as often as you.
I do note that your GP moved very quickly when you reported the back pain etc. - nevertheless annual PSA testing would likely have detected your situation much sooner possibly?
However, I'm very interested to know more, if you can share, about how you have avoided castration resistance. What meds are you on, and do you supplement at all? Or exercise religiously? Or follow a low-carb diet or other protocol? 9 years is just wonderful!
As for the Canadian Healthcare system, aside from the not-uncommon bias at the GP level against PSA testing (i.e. the original topic of my post), my engagement with oncology, nursing, technicians and more has been very good. My leading-edge therapy has pulled me back from the brink very successfully, and the experience has helped build confidence and optimism for my wife and myself. We are also very grateful.
I will try and answer your questions. I live in the Fraser Valley region of British Columbia. My primary oncologist works out of the Abbotsford Regional Hospital and Cancer Clinic (ARHCC) some 50 kilometres west of where I live. We are 110 kilometres east of Vancouver.
As for drugs I started on Casodex (bi-calutamide).After a month I was taken off Casodex and given Zoladex (goserelin) an injection into my belly every three months. Other than one year when I was on Firmagon (denosumab), I have been taking Zoladex ever since. Five and a half years ago my PSA started climbing so I was given the option of Zytiga (abiraterone) or Xtandi (enzalutamide). I chose Xtandi.
Four months ago my PSA started climbing again. With the support and encouragement of my Abbotsford oncologist I applied for the SPLASH clinical trial. This trial is investigating the use of Lutetium-177 pre-chemotherapy. Four hundred men world-wide and only ten from BC. I was the tenth and last person chosen. Although I was not placed on the Lutetium arm I was placed on the SOC arm. Part of that was dropping Xtandi and going on Zytiga which I have been taking for a month. Amazingly, my PSA has dropped to 0.18!
Other than the Cancer Agency drugs I also take Prolia (aka Xgeva) for bone strength. I receive a maintenance dose which is an injection into my arm every six months. As for supplements, I take Calcium, Vitamin D, Omega 3 (fish oil), and Vitalux. The last one is to prevent macular degeneration which rendered my father almost blind in his latter years.
As for diet, I eat what I want although I have dramatically cut back on sugar. Although I am certainly not a teetotaler, I drink far less than a few years ago. I am 77 years old, walk with a cane and occasionally a walker. I do try to exercise but will not walk on icy or snowy roads. I am far too wobbly to do that safely. I hope that helps!
RL, thanks so much for sharing your amazing story. It sounds like your oncologists are also amazing. I'm also on Abiraterone + Prednisone too. And as for fish oil I just eat sardines quite regularly. Mmmmmmm 😀. Again, your history is very encouraging. I wonder if your doctors have any ideas as to why you are doing so well compared to the median? Keep up the good work RyderLake!
Thank you so much. I am so lucky with a supportive wife, supportive family, great friends and a positive attitude. I counsel a lot of men where we live and the biggest advice I can give them is get informed so when you make a decision you make a wise one.
I read your story and I am glad that you responded to all the treatments so well. I hope that it continues in the future too. I was just wondering - hypothetically, if you were recently diagnosed, would your MO recommend triplet therapy straight away or would he recommend that you go on the sequential route as you did?
Hello, A very good question. Keep in mind that it was nearly ten years ago. 1). I was nowhere near as informed as I am now. 2). My cancer agency doctor at the time was a radiation oncologist not the medical oncologist I have now. 3). I live in Canada so there are strict protocols the cancer agency has to follow. For example, I was given the choice of Xtandi (enzalutamide) or Zytiga (abiraterone), but not both. I was also told that once I had decided on which drug to take the province would not fund a switch. Chemotherapy was an option that neither my doctors nor I wanted to try right away. 4). Finally everything I was given over the past nine years and eight plus months seemed to work so we stayed with the “status quo”! I have always been on two drugs Zoladex and Xtandi. Three was never offered to me as an option. Perhaps I would have considered it had Xtandi not been as successful as it was. Hope that helps.
What hospital do you get your treatment at? My husband has stage 4 PC, metastasis to the bones. He has a great team as well in Peterborough and Oshawa Ontario. Was on Xtandi for 15 months along with Eligard every 6 months. Xtandi stopped working after 15 months and he just finished his 10 session of Chemo Tuesday along with daily prednisone. PSA was at 48 two years ago and is just under 20 now. He is to continue prednisone until they wean him off. He will stay on Eligard. We hope and pray he is stable for awhile. He will be 78 in Jan.
three easy monthly shots of testosterone cypionate, a BAT protocol, can restore sensitivity to enzalutamide or to abiraterone. Search for the RESTORE trial. Increasingly being used by knowledgeable MOs outside of clinical trials. Also the STEP-UP trial. More need to know about this and bring it to their MOs for discussion. Much on BAT recently on this site.
I think things would have been different and better had the PCa been detected earlier through regular PSA testing. I am 67 and just finishing two and a half years of PCa treatment. Hope I can get to 78.
Your husband is slightly older than me. I turn 78 in September. My primary oncologist is in Abbotsford, British Columbia at the Abbotsford Regional Hospital and Cancer Clinic (ARHCC). I am currently on the SPLASH clinical trial which means monthly trips into Vancouver for consultations with the clinical trial team. I was asked to drop Xtandi (enzalutamide) a drug I have been on for five and a half years and replace it with Zytiga (abiraterone) plus Prednisone. I started this drug a month ago and amazingly my PSA has gone down. It is currently at 0.18. I do have the option of switching to Lutetium-177 should the Zytiga start to fail. If I get another five and a half years from Zytiga, I will be a very happy camper! 😊
I"m sorry RL1, where was your doc when your PSA was climbing from 0 to 1700 ?! Did that happen overnight ? In my case it was going up from 1 to about 4, over almost 2 years, then diagnosed G9 Stage 4. " Under 4 is ok " !!!
There was never any medical incompetence. I had a PSA test less than a year earlier and it was below 4.0. If there was a problem, perhaps it was because I was between doctors. My original family doctor went back to South Africa due to a family emergency. His temporary replacement simply did not diagnose PCa. The biggest reason was I have been plagued by back problems for many years and both he and I thought that was the problem. It was my current doctor who recommended another PSA test. It was then, and only then, that I found out that I had prostate cancer and that it was metastasizing to my bones very aggressively. Within days I was referred to a urologist and subsequently to an oncologist. The care I have received over the last nine and a half years from a variety of doctors has been outstanding.
I'm very sorry to read of your experience. My husband and I can certainly relate. He too receives (for the most part) excellent care from PMH in Toronto. I'm sure that you know that the Canadian Task for on Preventative Health Care has, since 2014, recommended against PSA screening. My husband's doctor retired and the replacement didn't seem to have experience to determine prostate density and my husband had no nodules in a location that could be felt. Finally, when a PSA test was done due to urinary symptoms, (28) I had to beg for a referral to a urologist. The new doctor told me, "calm down, I never said anything about cancer and you'll give your husband high blood pressure if you keep this up." The blood work I later obtained noted a 90% risk of prostate cancer. I contacted the retired doctor and he told me that he had a patient who had treatment following a PSA screen and a biopsy revealing low grade cancer. Apparently, the side effects of treatment were causing great suffering- the man was taking so much Viagara that he feared he'd go blind. The retired doctor told me he reflected on "do no harm" and decided that routine screening was doing harm. My husband, myself and our family are paying the price for that man who had a choice and didn't like the outcome.
It has been extremely difficult to let go of the anger and bitterness I felt. I realized that if I kept it up, there's be 2 victims. My husband has Gleason 9 and is now castrate resistant. He was about your age when diagnosed.
There's a prostate "Warrior" support group in Toronto that you may wish to join. I wish you all the best.
Thanks for sharing your amazing story CV! And it's good to mention the Toronto Warrior group, I am also participating as of a few months ago.
As for GPs, it seems too many of them take the lazy route of uninformed acceptance of policy maker recommendations, policy makers who may have different goals. My understanding is that from the beginning in 2012 that urologists were generally "bitterly opposed" to the recommendations that were coming out of policy making bodies around the world at the time concerning PSA testing.
So while "do no harm" is an excellent mantra for doctors, doctors also need to advocate for their patients, and need to understand that science is a debate.
For sure doctors have a huge body of knowledge that they have to master. But having a little extra knowledge about prostate cancer is easily justified by the fact that it's a top killer of men.
My GP did PSA tests annually but offered no treatment and did not do a DRE until I had symptoms, again he cost me years of life. His excuse was that only urologist does them annually, what a line of crap, I called him out on it. My friend has (54 age) not had his PSA checked in 8 years, same GP, my friend is going to do thr test at next appointment. Granted his PSA was .9 eight years ago and no history but that does not fly anymore . The medical field is very damaged and we have to be our own advocate on everything, so sad.
oh my goodness, my husband too. Lower back, he then said he had pain in his leg. Doc said, prob the heavy bench press. Oh man, I have to stop reading for a bit, it’s making me so mad!
My husband did not have a problem in Ontario convincing his GP to order a PSA test and it was repeated several times through the year. DREs were performed (always by junior doctors) who claimed nothing was wrong. Then he was put on antibiotics for a month (no symptoms warranted this). All along we were told that prostate cancer is the slowest growing cancer in the world and that there was no reason to do a biopsy. One was only ordered when the PSA hit 20. It was scheduled to take place in 6 months' time. As symptoms got worse, we pleaded for another PSA test. We were told by the GP that biopsy was scheduled anyway so what would change if we did another test. Eventually she agreed to order one. PSA was 50 (this is within a span of 4 weeks after hitting 20). My husband could barely walk by the time the scans were ordered and had to be taken in by a wheelchair by a volunteer as we were then in the pandemic. I read Dr Walsh warning in his book afterward the 3 signs to be weary of (a) PSA that is rising on 3 tests, (b) PSA that rises by more than 2 ng in a year and (c) PSA that doubles in less than 3 months. My husband had all the signs. I do not think that our urologist had read any of the books. Do they pass exams by taking multiple choices? He never asked for family history (we had 3 generations of it). Once PSA hit 50, they did bring the biopsy forward. The cancer had metastasised and has been aggressive to date. It is not yet 3 years and it is in the bones incl spine, and more recently in the lymphs and a bit in the liver. But it was not until we had a decent MO that we got better treatment. The rudeness, incompetence and arrogance of the urologist were a thing of the past as we never saw him again. Prevention is better than cure in most cases. At the least they should offer an option of a PSA test on a yearly basis for those with family history.
I agree that it is a travesty that every man does not have an annual PSA test.
Sometimes even that is not enough. In one year, my husband’s went from 2.4 to 11.7. His cancer was so aggressive that in the 8 weeks while he had MRI, biopsy, and scans, the day he started chemo it was 72.8 with widespread skeletal mets
In his case, every 6 month testing probably wouldn’t have been enough.
Interestingly, the first urologist he saw couldn’t feel it on DRE, but a week later the second urologist clearly felt it. Even urologists apparently can’t always do an adequate urological physical exam, so it’s not surprising that many PCPs are unskilled.
Agreed; it is just one additional tool in the toolbox. One would think, however, that a urologist wouldn’t miss one that was so easily found by another urologist!
Yes, the recommendations re PSA testing were and still are an underreported and generally unrecognized scandal. For starters, as far as I can tell, the 2012 U.S. Preventive Services Task Force (USPSTF) which made the original recommendations against PSA testing did not include any urologists or oncologists in their decision making. How is that possible? Instead of questioning the recommendations of the task force, doctors just stopped testing for PSA and did not advise their patients that they were doing so. That is unconscionable.
Even the updated 2018 recommendations only suggest that men be given the option to have PSA testing after being advised of the ‘pros and cons’. Most patients have no idea how to make this sort of life altering decision and will leave it up to the discretion of their doctor, especially if they have no obvious symptoms. The CDC notes, ‘They (PSA tests) may cause men to worry about their health.’ Well, a diagnosis of stage four cancer causes men to worry a whole lot more about their health. Worse yet, the CDC advises that ‘Men who are 70 years old and older should not be screened for prostate cancer routinely.’ So effectively, you’re disposable after a certain age. Good to know.
The PSA test is simple, quick, and cheap. There is no good reason not to have this test. Men (and their significant others) need to be made aware of the importance of having this test annually. We cannot be complacent about this.
Dett, your summary of the issue concerning the debate around PSA testing is so good and so well written and so well informed that it should be highlighted somehow.
Seems to have hit a nerve. And also it helps refine the story and the argument too. See discussions around "I trust the experts" and "my doctor has the best of intentions". This form of course is a self-selected group and biased towards the more informed and people more likely to advocate for themselves and their families.
In September 2022 the EU Commission recommended that PSA based screening should be started. One assumes they took into account all the latest studies. For example there was a European study that reported in 2019 that demonstrated an overall benefit. However this message clearly has not got to practicioners on the ground as here in Ireland GPs are advised to tell asymptomatic men that request a test not to get it. So there are still a lot of mixed messages about it. I would never have been diagnosed with a PSA of 76 if the GP had not taken it upon himself to get a test when I went to him complaining of fatigue.
------
EU Commission, Sept 2022
What are the new cancer types that have been added and why these three?
The Commission proposes to introduce screening for lung, prostate, and, in certain conditions, gastric cancer.
Prostate cancer: the Commission proposes introducing to prostate-specific antigen (PSA) testing – like a blood test - for men up to 70, in combination with additional magnetic resonance imaging (MRI) scanning as a follow-up test.
Like many of you, it is possible that my cancer may have been caught before metastasis if I had had a PSA test before age 55, despite not having any risk factors. I don't blame anybody for that. Lets not forget that we are a unique subset of the general population and have a difficult time looking at this issue objectively. The medical experts around the world who make policy decisions against mass PSA testing have legitimate reasons for doing so. They weigh the pros and cons of their policies and make recommendations based on what is best for society as a whole. I trust those experts. I don't believe that they are deliberately creating policy designed to create more death than necessary.
For the record, I have had excellent care from the Canadian universal system. I have nothing but respect for the professionals I deal with at the BC Cancer Agency.
Unfortunately the recommendations were made about 7 years ago using data and studies that are, on average, 15 years old. Recent advances such as MRI's , fusion biopsies, etc. were not known or taken into consideration. Two recent studies that I know of out of the US are showing the folly of these recommendations as the number of men with advanced PCa is climbing ever since that recommendation not to test was made.
We routinely test for cholesterol and nobody objects to that. Oh wait a minute, it enables the sale of even more statins. Can't do that with a PSA test.
Mark, Your very well-written comments are appreciated as an excellent example of the kind of groupthink that has driven the tragedy that we are exploring here.
"I don't believe that they are deliberately creating policy designed to create more death than necessary." - this is a straw man argument. No one has suggested that at all!
Your argument ignores the fact that policy is always contested. The paper in 2012 that drove a lot of policy making has been in retrospect shown to have been flawed in logic and data.
And at the time the paper and the policies based on it were strongly contested by urologists and others.
As for trusting the experts, I presume in Canada you are familiar with the Krever Commission and the Canadian tainted blood scandal. Experts were shown to be incompetent and venal.
I strongly object to your post because instead of engaging in the discussion you are basically saying it is illegitimate to raise these issues.
I trust that we can continue to discuss and disagree at the same time. And that the moderators will allow vigorous but fair disagreement.
People should be discussing these issues. It is healthy to critically examine policy and make updates as needed. My oncologist was recently involved in updating the province of British Columbia's prostate cancer treatment protocol.
I am not an expert in the field of prostate cancer. I find it difficult to believe that the experts who design testing policy are wilfully ignoring strong evidence that their policy is wrong. What would be their reason for doing so? The fact that this policy is the same in many different countries makes me think that there must be good reasons for it. There are "bad apples" in every field of human endeavour but there are are many, many good people involved in cancer research and government health care policy. I trust that they will amend the policy when there is strong evidence for doing so, based on what is best for society at large.
Mark, you are a very articulate exponent for trusting the experts. And in the main, healthcare leaders I would imagine are well-meaning people, and hopefully well-educated, widely experienced and continually updating their knowledge.
But don't forget I shared about the Canadian tainted blood scandal. Also run by your "good people" in healthcare.
There's lots of research about institutional dysfunction, where bad things come out of seemingly rational organizations.
In the context of misaligned incentives, uncertain science, the sociology of status and more, good people can do bad things.
And that doesn't even account for the fact that there's a certain percentage of bad people in any institution. "Bad people" include both lazy people who don't update their knowledge and just plain old corrupt people.
(In this context and in response to your suggestion that it's unlikely that good people would ignore strong evidence and data, it's worth looking up the so-called "research replication crisis" and Prof. John Ioannidis. Basically people fudge data and ignore data and misconstrue data quite often! In academia, and public policy, and in private sector.)
People who work hard to acquire expertise and knowledge, either through study or through experience, are to be respected and they can be incredibly helpful.
But experts are not magicians and one does not blithely trust them. Because in the end they won't be at your bedside holding your hand when you take your last breath. They have no skin-in-the-game. (Look up Nassim Taleb.)
And the final result with tainted blood and likely with PSA testing is that people die who didn't need to die.
Sorry MarkBC, I do not buy a sentence of that as it assumes that people cannot be trusted to make decisions about medical care. If you get a bummer psa test result at age 40/45/50 (whatever age) it is at that point you can have discussions about pca and side effects of treatment, but it is flat out wrong to deny people a chance to avoid a death sentence.
Well said! In my post above I argued that Mark should not put his trust so much in institutions. But you have brought up the other side of the coin, which is the top-down, paternalistic (even arrogant) distrust, by institutions and their representatives, of individual citizens to make informed choices.
It appears that the thinking has changed based on new evidence that there is an overall benefit from a properly designed screening program that minimizes the risk of over diagnosis.
"Now, in new guidance published this week, the Commission has accepted the case that the benefits of prostate cancer screening, based on a risk-stratified programmes using PSA testing for at-risk groups, far outweigh any risks of overdiagnosis." - Sept 2022
No problem. Here is the link which includes a link to the commission recommendation plus some additional information. As I understand it member states have 3 years to report back on progress so will probably take a number of years to become standard practice across the EU. Hopefully this leads to other countries taking note plus GPs on the ground recognising the importance of PSA testing.
The terminology here is suspect. When we say "the risk of overdiagnosis", this is conflating two different things: (1) false positives where you think you have prostate cancer and you don't and (2) bad decisions resulting from any diagnosis correct or not. The whole "let's not do PSA testing" position is a kind of "we'd rather be ignorant than be responsible for better decision making" error.
Agreed. Overdiagnosis was my word intended to mean (1). My understanding is that previously screening was not performed using PSA because it would result in unnecessary testing (e.g. biopsy) and treatment of men who otherwise could have lived their full lifespan without any intervention. This has now been seen to be mistaken as recent studies show it is possible to do PSA screening whereby the benefits outweigh the negatives. Hence the new EU recommendation.
Did not realize that was the SOC in Canada or the states for many years. Since my father died of PC at age 59 back in 1987 I’ve always had a yearly PSA. Just lately my GP said DRE were not standard anymore however I always insisted due to family history. One would think a simple blood test would have been required at that time.
I understand, since I was more of a high risk I had a PSA test every year. I just thought that was the standard for all men over 45 or 50. I was not plugged into the PC world over past 25 years until just recently being diagnosed. Seems like the issue was more with the protocol after the PSA test. Being high risk or not, I would want to know if I had PC with a simple blood test.
Exactly: "Seems like the issue was more with the protocol after the PSA test." For the record having a high PSA is not a full-on guarantee did you either have or don't have prostate cancer. But it's a pretty clear indication of something going on.
The more extensive screening by PSA BEFORE 2012 was resulting in far too many men suffering the consequences of radical prostatectomy for low risk Gleason 3 + 3 cancer.... I assume that situation was a major consideration in the 2012 guidance.
Of probably less significance, I recently had DEXA scan and found to be osteopenic in addition to Gleason 4+5, for which ADT is commonly used , alone or with radiation. The ADT impacts bone density, which for me is already impaired. After osteopenic determination, blood test showed in range serum calcium, but vitamin D level EXTREMELY low...... did the low D over many years cause the osteopenia....certainly reasonable to speculate on that possibility. Low D is VERY common in Northwest and anywhere folks receive little sunlight.
I asked the GP why , with this a known fact, D testing was not standard. She had no good answer. I don't know if we can compare missing earlier detecction of PCa to the gradual weakening of bones that can be related to low D....just to mention that there are probably a large number of medical problems that might be of less impact were standards allowing for more testing .
My PSA was checked for 2 years in a row. I was never told the results. On the 3rs annual blood test I didnt feel so good so I asked all the results. My Vitamin D was extremely low also. Come to find out my PSA results were 16 the first year tested and 19 the second. I was never told until the 3 rd test at 60. Then I was referred to URO. Biopsy Gleason 9 by then. I now take 10,000 IU daily of D. I live in WNY snow Country Mostly there is no sun in the Winter.
10,000 IU supplemental D.......is that maintaining your blood level at a stable D number? If so, what is that stable D level now? Did you have a DEXA bone density scan? results?
I have not had my D checked lately. I think the 50 to 70 range is good for me. I probably take too much but I figure it better high than low. I have not had a DEXA scan that I know of. I had a bone scan a year and a half ago but I think they were just looking for mets.
Maley - your first paragraph highlights very nicely the error at the root of this tragedy. PSA testing was blamed for poor outcomes associated with subsequent bad decision-making and especially, poor outcomes associated with too many profit driven surgeries. Better to be ignorant than responsible for better decision-making.
JH, my husband the same, as his PSA rising over two years was never taken seriously. Mis diagnosed with no mention of rising PSA. Finally after a turps operation, he was sent for scans. Doc still waited two months to order scans. Stage iv Mets to the bones and lots of tumors. I have great empathy for you and know what that anger feels like… finally when I questioned the doc.. why was this ignored, his reply was “these things happen”. It will be too painful for us to fight this, and unfortunately I do t think we will win! Let me know if you do, I am very sorry this has happened to you!
A consumer can order their own PSA test if their PCP refuses to order one. The consumer can do this directly from sites like LabCorp or LifeExtension. A physician associated with the lab authorizes the test, and the results are provided through email.
As some of the previous posts, the patient today needs to be pro-active
If a PCP physician refuses to order a requested PSA test, I would find another doctor
The recommendation on PSA testing from the U.S. Preventive Services Task Force (USPSTF), made no sense at all, and I believe it was cost motivated because a high value would require further investigation to determine what the cause of the increase was due to. Even before going the biopsy route, I would want an MRI done to look for suspicious areas, followed by a directed biopsy in those suspicious areas.
Because of this recommendation, anything coming out of that groupI take with a huge grain of salt.
Thanks for posting this JHMX. The response is far better than what we have seen on the CCS site! I had a family history of PCa - maternal grandfather, father, and oldest brother - yet the GP REFUSED to conduct a PSA test.
In 2017 I went to an independent medical and PSA was 5. GP said that is only because I had an enlarged prostate. Saw her again in May 2020 and she did a DRE, said everything is fine just an enlarged prostate and refused to do PSA test. Three months later I had blood clots in urine and GP decided I should see a urologist. DUH.
Took almost one year to find the SOB - it had extended outside the capsule in three places yet the GP didn't detect one while doing a DRE. By now my PSA was 25 - had surgery, radiation and 2 years of ADT. The surgery and radiation was fine but the ADT is a medieval treatment that could have been avoided had regular PSA testing been taking place.
In reading all the other comments it seems I am in good company and it seems to me we need to start to speak up vigorously to put an end to the BS. Thank you to every who has contributed to this discussion.
Thanks for sharing your comment DS. I was in touch with CCS ( "Canadian Cancer Society") and apparently they are in the process of redoing the website.
Agree that for men over 50 if primary care refuses to do PSA we should get it ourselves or get referred to a urologist. The prior USPSTF policy was medical negligence IMO.
Most GPS, FPs and internal medicine physicians do NOT do an adequate DRE if at all. They don’t like to do them and it is just perfunctory. If PSA is abnormal or other suspicious symptoms then get referral to a urologist. They do very careful DRE because they are actually carefully feeling for abnormalities, so they are much more likely to find them.
I was fortunate to have a Canadian trained FP who did do a careful DRE at annual exam and felt an abnormality. That was 2007 and led to my diagnosis and treatment for locally advanced PC, even though my PSA came back at just 4. Grateful to that good doctor.
Boy can I relate to this. My GP never checked my PSA for 4 years, when the finally did, and sent me to a urologist, I was found to have Advanced Prostate Cancer, Gleason 9, Grade 5.
I'm 69 now now and not winning the battle, and expect to lose at least 10 years of what could have been an enjoyable retirement.
every story infuriates me.. the anger is building up all over again. I wish the docs that misdiagnosed, did unnecessary surgery’s ignoring PSA numbers or not even checking. PSA, and did not listen to the obvious symptoms over the years could feel the loss and the pain we all feel, the pain when I look at my childrens faces when they see their father , so thin and old in one years time. I feel so awful and sad and miss our lives, the way it use to be. Jim kept telling them he felt something was not right…. Two years. Now we are smart, but too late!
I totally agree. My husband began experiencing ED and I urged him to see primary. His answer was Viagra which didn't work....and caused a big red flag in my mind. He also said that he could tell I didn't have a thyroid problem by looking at me.....after my younger sister died and autopsy indicated Hashimoto's which I was later diagnosed with by an endocrinologist. We changed drs. and he did immediate blood tests including PSA. He called as soon as he saw results since it was 18 in 2014 with recurrence in 2018, now castration resistant. Who knows what his LE could be if only....
ok my doctor told me i had high prostate it was 6 if I'm correct, told me not to worry he would do a test again, but he had a stroke, i got sent to nurse practicener she said they don't do these test not to worry, I should have been my own advocate so the next year i got a doctor he said they don't do the test but he would watch for it in the blood no call again I'm adopted so i was jumping up and down to no avail but i did an ancestry test and talked to a brother I've never meet in 60 years he said tell that doctor it runs in the family so i called test done immediately. My psa came back at around 19 and my glesson was 9 so out came the prostate approximately 5 years to do this process i have no back pain anymore and boy did i , all i can say is we have to be our own advocates and get the word out and i do our system in Canada sucks thats all im going to say. i hope someday soon to meet that brother in Alberta 60 years,im 11 months into this journey and one day at a time she goes God bless.
I was diagnosed in 2015 after my new PC doctor a DO insisted I get a psa test. Was 20.6. She then insisted I see a urologist.The uro, she, did the DRE and it hurt. Stage 2c aggressive with no mets. Now beginning my 8th year I am listed as incurable, taking Nubeqa & Lupron. Before the new PC the doc never recommended a dre or psa test saying avoiding misdiagnosis and over treatment.
Lets look at it this way - If there was a blood test for breast cancer that helped find the disease earlier than mammograms and was reliable you can bet your life that it would be standard care for women from age 30 up. Women would insist on that test to avoid the surgical treatments by the thousands.
But the psa test? One medical group said Nope too much harm.
Its not a generalized issue in all parts of Canada. I had a DRE when I turned 60 and I accepted to pay $30 for a PSA test, and once I had urination issues beginning at 64, the PSA was done regularly at no charge and picked up the disease. Different physicians will have different approaches, and the vast majority of Drs that I work with have no issues with a PSA test for anyone over 50. We are not being held hostage by the medical system, rather being assisted by the system, if we become better advocates for our health.
Hi Hailwood. You are fortunate to work with good GPs. But I don't think the phrase "the vast majority" can be extrapolated to the entire population of doctors in Canada. The SOC ("standard of care") i.e. approved and funded by various Canadian health insurance bodies is to my knowledge against regular PSA testing. And that's what most doctors adhere to. I would be happy to learn otherwise.
It has nothing to do with any health insurance bodies as the test is free and freely available at the behest of a physician and they are quite happy to order it if you are willing to pay a nominal sum out of curiosity, but it becomes free instantly as symptoms and signs indicate.
In Ontario Canada, here is the standard for a physician ordering a PSA test:
"OHIP will not pay for testing when a man’s physician or nurse practitioner does not suspect prostate cancer as a result of the findings from a routine physical examination or as a result of a patient’s family history and/or race. In these circumstances, a man can have the PSA test if he is willing to pay for the test himself. However, it is hoped he will make this decision only after discussion with you."
Meeting none of the above criteria, and not really paying attention to the risk (or having any symptoms), I end up in the position I'm in.
The cost of a PSA test in Ontario is about $35.00, which is nominal I guess. In our local area a lot of people use food banks and it's not nominal if you're on low income.
That’s a fair enough reply, but perhaps your presumption that I also don’t live in an area where a lot of people use Food banks is off slightly. I repeat that in my direct experience with 90% of all physicians I work with, is that if there are any concerns with the first symptoms of prostate issues, a PSA is ordered and as such is free of charge, but then we do have a more caring Provincial government than you do in Ontario. Take care
I had my first DRE when I was probably 42 and had a PSA test with every annual physical starting at that age. I hope you don't think that having a DRE at age 60 is adequate prostate cancer screening or excellent medical care. It is the extreme opposite of that.
We need to always remember we can change doctors and should if they are not following our wishes. Bring bitter hurts you and creates stress which effect your health. I have found that forgiving and dealing with the path you are on keeps you focused on staying as healthy as possible.
DMT you are correct about the cost of bitterness. It's a good idea to be positive about the future. And it's also better for one's loved ones.
Nevertheless research apparently shows that people with positive attitudes do not have any better cancer outcomes than people who have bad attitudes.
And as for bitterness let's consider the case of the tainted blood scandal in Canada in the 1980s. This was where venal and incompetent healthcare executives made terrible decisions which resulted in large numbers of people contracting hepatitis C and HIV. For instance hemophiliacs contracted both.
Life throws you a curve and sometimes life is hard. And you try your best to respond. But the powers that be that screwed up and ruined your life are of course very happy if you don't get upset.
Fortunately in Canada a lot of people got very upset about tainted blood and there was the Krever Commission and some people were punished and important improvements to the blood supply were made.
I truly understand your bitterness based on my own experiences. I only put so much weight into studies about such things. Other studies have shown the general health benefits of a positive attitude which I believe correlates with longevity and better quality of life with PCa or any other similar disease.
I am a cynic by nature, especially having grown up in NYC in the 1970's. It has been life and studying of healing (prior to my getting PCa) that I have chosen to honor. Whether or not a better outcome results, it certainly makes living your life happier and allows you to live in the moment.
Thanks to all the marvelous replies so far to this question about PSA testing policy and lost years of life. I note that a number of people have mentioned that they asked for PSA testing themselves. And that their GP in some cases was willing to do that.
This has become another source of regret for me. I did not ask for PSA testing! I feel really stupid now. I was trying not to be a hypochondriac I guess. And paying attention to the usual media (Toronto Star, Globe and Mail, CBC etc.), it's easy to absorb the message that prostate cancer is not really a concern. And if you even dug into it a little bit you got the usual party line that PSA testing does more harm than good.
(In retrospect it's very strange that the two main media messages for the past 10 years around prostate cancer were in direct conflict with each other: Prostate cancer is both (1) "the leading cause of death for men" AND (2) "nothing to worry about!" I guess it's kind of like Brave New World and both can be true at the same time 😀)
In the past, when I even thought about prostate cancer it was always the almost smug thought that "prostate cancer is something that happens to other men, usually old men". Until the backache, and who doesn't get a backache, I had zero symptoms. The entire discourse between media and healthcare system added up to "don't worry, be happy". So I didn't and I was.
Now we are beginning to see research that because of these decisions all over the world a decade ago there is a growing number of people in the circumstances that we were discussing here. We are seeing a rising population of people whose first diagnosis of prostate cancer is that it is already metastatic. Again, this reminds me of the Canadian tainted blood scandal.
In the meantime the impact on my wife and daughters is heart-rending. As is the impact on families everywhere. Lost years.
You are absolutely right on the mark. So much propaganda telling people prostate cancer is no big deal like "more men die with it than from it" or "it's not aggressive and grows slow". I fell for it too. We could say more people die from arteriosclerosis than from it so let's stop testing for cholesterol. Same logic.
When I first started treatment someone told me more men with PCa die from heart attacks and strokes than from the cancer but then I recently learned the "treatment" (ADT) increases the risk of CVD by 30 - 50% . So the treatment is killing us.
I recall the powers to be edicting that the PSA was unnecessary a few years back. The dumbest decision ever made. Another example that we MUST be our own advocate!
About 11 years ago the United States Preventive Services Task Force recommended that the PSA test not be given to those over age 75. This was done because it was believed that men who should be under active surveillance were being overtreated. Solution: Don't give a PSA and the problem goes away! This mistaken has been partially rectified by the USPSTF now suggesting that an individual consult with their physician. In 2021 I was diagnosed with mHSPC. Not having had a PSA test in 10 years (I was then 74) is most likely the cause for the metastases.
Without getting to political, I am reminded when the Covid positivity rate was rising to new highs, President Trump's solution was to stop testing.
PSA test invented in the 1980s. It was a miracle. Late stage men showing up in the office was now a rarity. But i suppose urology industry profits went way down.
I suppose some higher ups came up with the concept of “overtreatment”. Oh! We are hurting these poor poor men with all of this overtreatment! Sticking needles in there arm and everything. It hurts. Lets stop hurting these men. Viola... profits back up.
Every man you meet that had prostate cancer 20 years ago was over treated by some margin.
Every man that dies in a few years was under treated or under monitored.
But just be happy that we are all Big Fat Juicy Customers for the urologists. We are big spenders. We don’t waste time playing golf or fishing, we just study prostate cancer and give them money.
It would be good to understand this better. Your point about the profit-driven nature of the American healthcare system is well taken. But that doesn't explain the same thing in Canada and UK and other countries around the world. Furthermore apparently the urologists were adamantly against the recommendations during the 2012 period when the research came out.
Thank you JHMX for starting this discussion. It has been an eye opener. Do you know, I had never even heard of a PSA until I got the call from the hospital. Never once mentioned by my GP.
As I mentioned before, I'm surprisingly at ease with ending up where I am. I cannot explain why. Writing this down has been quite helpful to me.
I will think about how I can take this forward e.g., lobby my local government representative, my own GP.
The combination of the misguided recommendations in 2012 and the efforts of insurers not to pay for PSA testing done in spite of the Guidelines was a sad chapter. "Scandal" is probably too strong a word. Most physicians try their best to do a good job.
Dad, I don't think "scandal" is too strong a word. Here's why:
(1) the original 2012 recommendations were controversial when they were released, and opposed apparently by urologists and others. The recommendation against routine PSA testing was not a slam dunk.
(2) I agree that most physicians probably try to do a good job. Or at least they think they're trying to do a good job. That's not good enough though.
(3) But are they doing a good job? Are they pushing themselves to better understand the situation? Or are they merely good at parroting the positions of policy organs? And providing hackneyed bromides about good feelings?
(4) Prostate cancer is a leading killer of men. By killer we mean actuarial loss of expected lifespan. This would be a strong motivator for any doctor to dig in a little bit more.
(5) "Scandal" implies that the scale of the problem is very large. And that alternative decisions where available. And that the cost of the decision (e.g. premature deaths) taken compared to the alternative, was high. And lastly that even according to the standards of the day, the decision was poorly reasoned. All these things are true.
(6) Front-line doctors and doctors and healthcare researchers and executives on policy-making bodies are highly paid and have a great deal of status and influence. Wehold them to very high standards. Because the decisions they make concern life and death and economics. "Trying their best" isn't good enough and isn't an excuse.
(7) My sense is a lot of physicians were merely parrots. The anecdotes in this thread of independent-minded physicians who took a different approach is evidence of this. As for policy makers who made poorly reasoned decisions, possibly influenced by for-profit institutional imperatives, they were not parrots of course, but something worse.
No, scandal is not too strong a term, whether applied to physicians or policy makers. It's the perfect term.
I cannot speak to the Canadian Health Care system. I CAN speak to the USA one as I am a member of it. It is is a sorry state. That is the scandal. The second scandal is that the USA remains the last industrial nation on the world without a universal healthcare plan. That is in the lap of the Congress and Senate. They are in the pocket of Big Pharma and the Insurers. The final scandal is that physicians spend an inorderiate amount of time completing their electronic medical records" which appear to me to be designed to satisfy the insurers and extract payment from them. I left primary care medicine in large part because I wanted nothing to do with EMR. I still do it the pen and paper way. I do not spend my time pushing radio buttons on a laptop. I spend it talking to my patients.
Same situation. Its been almost two years since diagnosis. Same as yours. He just turned 60 last month. His mom died of breast cancer quite young's did his aunts. His brother has stage 4 pancreatic cancer. Brca2. We have two teens and a 20 yr old. It was super hard accepting it. To be honest I tell myself I'll try everything (alt med too) to keep him alive and pray medicine keeps coming up with treatments until they find a cure. And I keep searching online an din books for any info that might help. Good luck to all of us.
Here in Australia an annual PSA test is covered by Medicare. My experience has shown that it depends on your Doctor's point if view as to whether they discuss this with you. Increasing PSA blood testing awareness seems to me to be a positive and achievable way to reduce advanced prostate cancers. Happy New Year everyone, cheers DD 😎
A dear friend of mine in France, in great shape for 82 years old, had a pain in his hip that wouldn't go away. He thought it was a nerve or a muscle, but it was a lesion from metastatic pc. His psa was around 680. Long story short, long life shortened, he lived about two more years. I don't know if there was a glitch in the system as far as testing; I wasn't concerned with assigning blame. But once he was diagnosed, he received excellent care from the same system, and didn't have bills to worry about on top of his illness.
My understanding is that the primary reason PSA tests are not recommended for all men, regardless of risk factors, is that the test is not good for diagnosis. The only way to prove whether or not a high PSA is actually cancer is to do a biopsy. The prostate biopsy is very invasive, resource intensive, and can result in serious infections. Given that 80% of diagnostic biopsies are negative, it doesn't make sense to subject tens of millions of more men to them. The positives (catching more cancers early) do not outweigh the negatives when looked at from the prospective of the worldwide population of men. Breast cancer screening and biopsies are much more reliable, less invasive, and less risky. That is why mammograms are recommended for all women.
That was the argument 10 years ago. And it didn't make sense then - because just because you have a high PSA is no reason at all to necessarily have an invasive, costly and slightly risky test. One does not follow the other logically. New research in the last few years has revealed the large increase in the number of newly diagnosed prostate cancers which are already metastatic. And the implications of that are explored in multiple posts associated with this thread here today.
This is a good discussion and I'm glad you started the thread.
I do trust that the experts who create medical policy will stay current with all of the research. If the research presents a strong case for changing the policy on mass PSA testing, I do trust that the national authorities will do so. Some may call me naive but I don't see corruption and ulterior motives everywhere I look. Society would break down if we didn't place our trust in knowledgeable people even if mistakes are sometimes made.
Thanks Mark. I still have to respond again though!😃1. "corruption everywhere" - no one is suggesting that. It's an rhetorical argument though that averts attention from failure. And there are many ways to fail.
2. "mistakes were made" - this almost makes me laugh because it's a meme for "hey, so sad your Dad died early, but not my fault".
My point overall concerning policymakers and doctors could be summarized in Luke 12:48 - "Unto whom much is given, much will be required".
The feeling of bitterness and regret may be worse than the cancer. Find a way to let go of what could have been. Life, with or without cancer, weaves a winding road of unforseeable possibilities. Hindsight only illuminates the wrong direction, making you stumble into the future, robbing you of what joys the road ahead may still offer you.
Very nice poetic response JV! And what you say is true, on an individual basis. But I bring up the same example I have brought up before.
In Canada in the 1980s a very large number of hemophiliacs contracted hepatitis C and/or HIV, due to the incompetent and venal administration of the blood supply.
A huge investigation ensued, punishments were meted out, and most importantly the blood supply was reorganized to be much safer. The venal and the incompetent are very happy if people are not angry and bitter.
Let's live the shortened lives we have with joy. But at the same time we should understand what happened and advocate for improvement.
Oh, I do agree with you. The appeasement rhetoric of many providers as well as a seeming need to rubberstamp mediocre treatment in exchange for billable service is infuriating. We must challenge them for ourselves and for all the cancer patients who will follow.
I am thankful my GP still performed the digital exam. 2 of the Dr's in his practice don't always do it. My PSA was 3.5 but the exam found an enlarged prostate which lead to my DX. I met with him 2 weeks ago as I haven't needed a GP my care. I thanked him, he said that the recommended standard these days is to not perform that exam as it only finds less than 10% of cases. He said he still does it as hopefully he can find that 10%. It would have beed too late for me if it hadn't been done.
We estimate that per-patient annual costs attributable to metastatic prostate cancer are $31,427 (95% CI: $31,219-$31,635; 2019 dollars)
After the wide adoption of prostate cancer screening with PSA testing, there was a marked decrease in the population-level incidence of metastatic prostate cancer in the United States.1 But in 2008, the United States Preventive Services Task Force recommended against routine PSA screening for men over 75 and in 2012 recommended against routine PSA screening for all men.2 Following these recommendations, the incidence of metastatic prostate cancer has steadily increased. From 2008 to 2014, the incidence of metastatic prostate cancer increased by 4.4 per 100,000 persons,3 possibly due to changes in screening recommendations.4-6
Having twice seen secondhand what it takes to get an advanced degree (daughter surgeon, ex pHD psychologist), there are reasons why practioners don't buck the system. People who question professors don't make the cut. For however many years they are in "training", they give back the answers their professors expect.
In my daughter's case, during medical school she studied every hour she could. Sleep and an occasional run were her only respite. Eating didn't stop her from studying.
""Unto whom much is given, much will be required" Only some of the smartest people in our society get into medical school. Rather than encouraging them to think, they learn to "go by the book". If the book is wrong, they aren't going to be the ones to change it. You don't get sued for malpractice for going by the book; you get sued for thinking independently or thinking at all.
The less skilled among them become members of the "mediocracy". They become the ones who come up with "guidelines". Groupthink is what they do, and they get to impose their groupthink on people far smarter than themselves.
We're on our own. We can't count on practioners, mediocrats or anyone else to think for us.
Thanks for the fantastic contribution Trax. Now we're into serious sociology of medicine and science territory. And it can be pretty depressing until one wonders "how do we make any progress at all ever?" And clearly progress has been made in many fields, so therefore there must be some hope!
yes john, what you describe is what i have experienced and is the only thing that can explain what we are seeing.
These docs are trained not to think but to follow the treatment flow charts/protocol that is given to them from the above industry leaders.
And failure to follow the flow chart can be very costly to them. But following their guidelines/flow charts is much more costly to men and their families
I'm not yet on ADT...while no one could say with certainty that my osteopenia( approaching but not yet osteoporosis) has been caused by low D, the low D could be the leading cause....my serum Ca is fine!!! Yes, that is why I'm terrified re use of ADT......weak bones and still have my T ....550 2 years ago. Mom had 2 broken hips...both sides, and last one may ? have been main factor in her death at 81. My sister is also osteopenic at age 72.
seems like a real no win situation.....skip ADT and increased risk of earlier death from PCa, or ADT and increased risk of osteoporotic events!!
I am also a resident or Canada. I’m 70 years old. For the five years prior to my diagnosis in late 2019, my infrequent PSA scores were between 5 and 6. My family doctor was not concerned. Then I had some kidney stone issues and a Urologist was appointed to put a stent from my bladder to my kidney. My PSA went up to 7.5. My doctor said not to worry. The Urologist said “Oh, your prostate seems to be enlarged, but that’s not what we are here for is it?” Then after this, I started pissing blood. I asked my doctor to review my PSA scores. He said “They are trending down (from 7.5 to 7.2) which is good news”. The Urologist eventually removed the stone by laser lithotripsy, and told me later that I did very well, and I’m not going to die (jokingly).
Then suddenly, next came blood in my seminal fluid. This was then followed by drops of fresh blood at the commencement of urination. I knew something was seriously wrong. The Urologist said I needed a TURP. Four weeks after the TURP my PSA was now 12. The “younger” Urologist said the testing of the tissue removed from my prostate confirmed that i had prostate cancer, but it was contained within the prostate and was curable. I said please remove my prostate surgically. He said yes, let me discuss it with the “older” Urology surgeon. The older Urology surgeon said he needed an MRI first. The MRI was very quickly organized, usually it can take months, but this only took days to schedule.
The next scheduled meeting with Urology confirmed that the MRI and lab work verified that my diagnosis was Stage 4 Ductal Adenocarcinoma of the prostate with involvement of seminal vesicles and neurovascular bundle and possibly one lymph node (unsure). Surgeon said he could operate but would only perform a pelvic extentoration. This involved removal of prostate, testicles, rectum, bladder, and possibly part of pelvic floor, and would mean surgical preparation for two ostomy bags. I asked how many of these surgeries he had performed previously and he replied only six with the Ductal variant. I asked him how those patients progressed. He said they all died within three years. He advised that the only other option was a referral to Oncology. I chose Oncology.
The first meeting with the oncologist was positive. She advised ADT + radiation with a curative approach. She said the diagnosis was Stage 3B but in Alberta a Ductal diagnosis is automatically upgraded to Stage 4. I was also a Gleason 8.
I’ve had radiation plus two years of ADT and my PSA had been recorded as <0.1 for the past 12 months. I was removed from ADT in October 2022 after two years and my oncologist said “let’s see if the cancer declares itself”. I’m going to do PSA test every three months for the next year, and my first PSA test in in January 2023.
The Radiation treatment was easy with no problems other than some minor radiation proctitis after 18 months. The ADT however really beat me up. That was the toughest bit.
My Oncology treatment at the Cross Cancer Clinic has been state of the art, very rapid, and very positive in every way possible. Wonderful people, very compassionate and caring. The facility is long overdue for replacement and only local provincial politics has prevented it from being redesigned and rebuilt. This facility has two renowned medical physicists working there who have designed and developed a unique Linac/MRI without any significant provincial support and it is miles ahead of the competition. My oncologist has been great to work with. She is an angel.
My Oncologist said that if she had seen my pre diagnosis PSA scores of five, she would have said “CANCER”. My family doctor didn’t even react at a PSA of 5.0, 7.0, or even 12.0.
So, I agree that my life has been negatively affected by the failure of my family doctor to accurately diagnose the reasons for elevated PSA scores. Just a month or two before diagnosis I had a DRE administered by a locum, and he advised that there was nothing unusual discovered (even though I was Stage 4 at that time but didn’t know it yet).
Am I bitter? Yes I am, but there is nothing that I can do about it. Can I sue Alberta Health Services? Maybe, but to what end? In my opinion it’s not worth the effort and expenditure of money and more importantly the expenditure of time. This family doctor was possibly mislead by the guidelines of Heath Canada, and in hindsight didn’t treat me with the seriousness that I deserved. I have told him that directly but his response was only silence. Obviously he couldn’t say anything.
As I have said, my treatment has been first class, wonderful, and living in Canada it has cost me nothing but a $10.00 charge for parking every day during radiation treatment. Have I lost any years of my life? It’s too soon to say at this point, but maybe I have. What I have lost however is peace of mind and quality of life. I’m never going to get that back and I have to live with that for the remaining years of life that god grants me. I have my next PSA test in a couple of weeks and I’m already experiencing anxiety. All of this because a family doctor failed to intervene at a time when a simple intervention could have mitigated the need for all of this.
All of this because of the naive recommendations of a group of pompous healthcare administrators in their drive to save dollars, based upon similar drivel conjured up in the research paper from the USA, and in both cases most likely followed by a fine steak with wine at Ruth’s Chris.
Life is what you make of it, until somebody fucks it up for you.
what happened to you TottenhamMan is perfectly normal and happens every single day.
The front line guys sealed your fate. Once you are a “customer” they treat you like gold.
Its the front line guys that are just a little too late.
Think.. they have all of the tools necessary, TODAY, to not have this happen, but they choose not to use them. Its the protocols that are passed down to the front line guys.
Same experience, GP felt PSA test not helpful. Extreme lower back pain, but not until I moved and had another GP was a PSA test done which led to a prostate biopsy and all 10 cores showing aggressive cancer. Good luck to you.
YingSang - "But you may be in the center being pulled to maintain your masculinity, verses treating your cancer." This is the first comment on this thread referencing this idea. Fantastic! I was wondering about this becuse there seems to be a lot of this whole 'how's your sex life thing' from the prostate cancer treatment and caregiving community. And you have interpreted it as "the idea that sex might even be more important than living longer". You're even suggesting that there may be a bias in some PC treatment centers for one or the other - which might not even be apparent to the patient? This is quite concerning. I choose life myself.
You can all thank the morons at the ironically named US 'Preventative' Services Task Force for starting the war on PSA testing. A very inexpensive test that can provide an invaluable alert to a disease in its earliest stage. Yeah, nice job 'preventing' treatment until too late. WTF were they thinking? This was their answer to 'over-treatment' of mild and non-threatening prostate cancer disease. Instead of targeting the patients they should have targeted the greedy urologists who make their living performing maximally intrusive surgeries. Yes, it is a scandal. Luckily I had a GP who provided DRE and PSA testing starting in my mid-40's so the disease was caught in a timely manner for me.
Question: Why is it that you are only allowed to be LATE on prostate cancer?
First they resist testing PSA in the first place. Then when it starts rising, the will try everything they can to explain how this is ok. Then, the only thing the industry accepts for official diagnosis is a piece of live squirming cancer they can see.
The bar set for diagnosis is very high considering this is life or death.
Some women get their breasts removed based on a genetic test.
Why can we never be early? Early is not allowed in their system.
Honestly we men should lobby for mandatory PSA testing every year after age 50, AND mandatory counseling on elective early prostate removal.
I had same issue, my GP did not test my PSA for 10 years (age 58-68) then retired, moved to Surprise, Az. got new doctor that tested PSA and I was at 12! RP, then advised it had metastasis. Then radiation, Eligard, Zitiga. I lost time in life, maybe? The hand I was dealt. Still alive. 😃😃
Well, i don't judge men who seem obsessed with their sexual life, and I'd rather not lose what I have left, maybe 20% at age 74 on Sunday, of what I had at age 30...but loss of sexuality is not my big concern re treatment...my concerns are all the other things that can happen as treatment SEs.
I'm fairly certain that my Kaiser RO would balk at using an anti-androgen while undergoing radiation..... he definitely balked when I asked about doing radiation without 18 months ADT, which is SOC treatment for Gleason 9....trials are adding Abi I think? Kaiser is big on following NCCN guidelines, and I understand the reasons for that. I don't know how Medicare deals with non-SOC alternatives that some men here seem to be doing? Seems as though anti-androgens are SOC for men who have failed 1st line ADT with lupron, etc? .
I do think that a man should be covered for radiation with whatever course of 1st line ADT he is willing to do....after all, it is not that radiation alone has no benefit for high risk men...rather as I understand that ADT increases the effectiveness re "cure" .
Thank you for taking the time to consider my scenario !!
Another Note Added Later: I recognize that not being more aware of my own responsibility to understand prostate cancer risk is my failure. Those missing years of life are also my responsibility. I'm now working to improve my decision making and focus. Contributing to a broader awareness of the opportunity PC early is one thing I can help with.
That part about “living with” metastatic prostate cancer made me think about a section of my cancer comic. How I dread discussing my diagnosis with folks because of their likelihood to dismiss the reality of the situation.
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My Introduction - elevated psa, unconfirmed prostate cancer
