Doctors (ie general practitioners or family doctors) are commonly accepted in the community as “learned men” who know better than you health wise.
Such was my case. Seven years ago my family doctor picked up that my PSA was gradually rising and sent me off for regular blood tests. Unfortunately he was a very unpunctual fellow and often kept me waiting to see him for at least an hour, Sometimes an hour and a half, after the scheduled appointment time. I became exasperated and spoke to his nurse who explained that he was now in the habit of running late on appointments and that if this made life difficult for me, i should go elsewhere.
This I did. The second doctor was not that fussed with PSA tests and advised me that once a year was fine. I accepted his advice.
Then a new, young energetic doctor arrived at another practice in town who specialised in cancer. By this time my frequent urinating had got out of hand indicating that something was up. He was not particularly concerned about it. He also poured cold water on PSA tests advising me that they were unreliable and a waste of time. I accepted his advice.
Some months later he left the practice and his position was filled temporarily by a locum.
I went to see the locum to try to sort out the urinating problem. He listened carefully, sent me off for a PSA test and referred me to a urologist. That urologist took one look at the test result of 10 did a physical examination and advised that, subject to a biopsy, I had prostate cancer. The results of the biopsy showed that I have aggressive, advanced prostate cancer. I have been placed on hormone therapy ( 3 monthly Lucrin injections) have had a green laser light rebore of the prostate today, and will start radiotherapy in a fortnight.
If the cancer had been caught all those years ago, surgery may have been the best treatment. Now there appears to be no clear end in sight. Advanced cancer is incurable.
What I have learned from this sorry experience is that I should have taken ownership of my situation all those years ago. I should have made it my business to research it and seek a second opinion. It was too easy to leave it to the family doctors who, in hindsight were not the “learned men” they should have been in this very common male complaint.
Beginning patients beware.
Chris Wheeler
Brisbane
Written by
sculptorgalaxy
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Great advice. Don't put your health in your doctor's hands. All patients need to take some control and work with their doctors. If the doctor does not take this relationship seriously, then find a new doctor.
You are not alone in having this type of experience. My primary doctor was busy and thinking I am healthy patient ,handed my case to his physician assistant.
He ordered PSA every year but never informed me of my abnormal results.
When in early 2019, I had Urinary Infection I found out that my PSA was rising for last 5 years. They messed things up due to their careless and negligent work ethic.
I fully agree that patients should be proactive and not trust providers of care. If I watched my test results like a hawk, I would not have had the diagnosis of metastatic PCA that I have.
That is the problem in dealing with large numbers (Statistics). For doctors there are deviations and they will not care as there are many YOU for them. For the patient, YOU are the only one and you are the truth. for medicine, you will be statistically insignificant. for You, the medicine is callous. Until medicine moves away from statistical model to a predictive model, You have to Look for yourself.
Same story - more or less. My GP never did a PSA test for me despite my age.
When he retired, the first thing his young replacement did was a PSA test. By then I was stage 4 with distant mets.
I don't linger on this oversight as this disease has given many profound blessings of a spiritual kind. I often wonder that my condition is indeed the best thing that has happened to me.
I thought I would throw in the positive aspect of this horror we find ourselves in.
Well said! PCa really ‘sucks’, but it does make you focus on what’s important. There is always some positive in this journey. We just need to remind ourselves sometimes to look for it! Thanks for the kind reminder!
I was in the same situation...older doctor about to retire. 59 and had never had a PSA. It was a 10.4 and surgery found it had escaped the capsule. Had a been tested just a year or two earlier I might have gotten it all or saved a nerve.
I agree completely. You know your body and if something is wrong and need to push the point. I have had a couple of similar run-ins with a PCP though they did not involve prostate cancer.
I had a growth on my forehead, the PCP diagnosed it a wart and if I did not like it I could have it removed. I went to a dermatologist, he too thought it a wart but at my insistence removed it and sent it in to the pathologist. The report back was squamous cell skin cancer. I then had to insist with the dermo to make sure it was to clean margins.
The second was chest pains while exercising. PCP had a stress test done at his place and declared all good, it was muscle. I strongly felt it was not and pitched a fit so to speak until he sent me to a cardio. Three weeks later angiogram showing LAD 90-95% blockage and 80% blockage on another artery. I have been through several more procedure and am doing well today.
I do believe you know your body and sometimes you need to be strong (pushy, obnoxious) in seeking treatment.
On the other side, sometimes docs can be too aggressive in treatment. When I was diagnosed with PCa, my original uro had me scheduled for surgery pretty quickly. Through a series of fortunate events I found out about active surveillance (not through him though). I found out that my cancer was not the aggressive type and I had time to educate myself and decide on treatment (again not through him).
I did a lot of self education and 10 years ago joined and AS study. In those 10 years a lot has changed in PCa treatment, new drugs, new procedures etc. Also 10 years without side effects. AS is living with the cancer and not for everyone.
When I was young docs word was treated as final and you did not question them. I have learned that as the consumer and the person who bears the consequences of the decisions I need to be involved and an active participant..
I trusted our GP she told my husband to come back in 6 months to retest his PSA, He didn’t tell me and didn’t really comprehend how important it was. He came in for three more years to been seen for other things but didn’t come in specially for his PSA test so they overlooked it and only saw him for a flu shot or to have his triglycerides checked. It too them 3 years to “remind” him. You MUST be your own advocate. I don’t trust even the best dr we have completely.
Chris you could have had surgery and been left with ED and incontinence. What’s your Gleason score? My buddy ignored his frequent urination. Many men do. In fact many Australian men don’t eat well either. Too much meat, alcohol, not enough veges. It’s about changing bad habits for good ones too. Doctors and drugs are useless if people don’t follow a healthy diet plan. I’m sorry you have PCa. It’s an awful disease.
I eat well and don't drink. Well, I guess it could have been worse--but it could have been better. Isn't everything in life like that?
Had a Greenlight PVP yesterday and am feeling more positive now that I am actually moving forward with some tangible treatment--unlike hormone treatment the effects of which are felt but not seen except in low PSA scores.
Good to see a fellow Australian on this site. I have a few comments. First of all all the advice that you have been given is all partially right. The evidence for PSA testing is pretty poor. I am a Dr and have extensive experience in palliative care and HIV medicine and have worked in general practice for longer than I care to state. In February 2017 I had chest pain and wound up in hospital but unfortunately it was not my heart. Someone suggested that I should have a CT coronary angiogram because I was going on a very difficult bike ride in Europe. Unfortunately my spine was full of cancer which turned out to be prostate cancer. I am on the dreaded treatment particularly the ADT which I hate. Give me chemo any day. I have also had lutetium PSMA which seems to have worked somewhat.
When I was first diagnosed I went to see a urologist who I know quite well and have worked with him in the past on developing pathways for assessing men with high PSA's.
He knew that I had been of the view which is endorsed by a large amount of science that PSA testing is fraught and that a large number of men have been significantly damaged by the results of those tests.
The first thing he said to me when he saw me with extensive metastatic disease and a PSA in the 500s was "so have you changed your mind about PSA testing now".
My response was no I have not. I played the lottery and went with the odds but someone has to get the disease and unfortunately it was me. I still think the right thing to do with the current technology is to not have PSA screening. It opens a can of worms and I have seen absolute disasters for many men who have had this screening. There are it is true a very small number of people whose lives are lengthened by the process of PSA screening and early treatment. However that number is dwarfed by the huge number of people who are damaged by the treatment and do not benefit in that they either get metastatic disease anyway or they die from something else or they would never do die from it at all anyway.
There is hope in the wind for my male children in that the accuracy of prostate MRIs is improving and hopefully that will be the gold standard. If you take the analogy with breast screen, women are screened for lumps. If you do random biopsies of 45-year-old women's breasts approximately 40% of them will have what's called DCIS which is cancer cells but not true cancer. What a nightmare this would be. Do you then do mastectomies give chemo et cetera for those women? Of course you wouldn't. What happens with women is they have a screening test which if it shows a lump, the lump is biopsied,if the lump turns out to be real cancer (not a few cancer cells) they are treated appropriately and this does save some lives. I am not convinced about PSA at all.
If you randomly biopsied men's prostate with "normal PSAs" you would find cancer cells in a significant minority. The what?
We only hear on this website the people who feel they have been harmed by not having their PSA followed closely enough or accurately enough et cetera. Those people who have had not had it followed but have lived a better life don't write to these sites.
Best wishes for your journey to live with this mongrel of a disease.
Thanks for your post. You make interesting points but I can't say that I will be taking them on board.
Firstly, I needed to do something about the involuntary peeing which had got to the point where I was peeing in full view in the street on a visit to Washington DC two years ago and peeing in the drivers seat on a short car journey late last year. An enlarged prostate was the cause and a high PSA the pointer to it. Sure a good digital examination may supplant the need for 'the unreliable" PSA test but an MRI is useless if you have metal hips, as I do and found out after much financial cost and inconvenience, despite the fact that all those highly paid doctors and specialists should have been aware of them.
No, I shall be going the route of hormone replacement treatment and radiotherapy--- and hope for the best.
I think I'm seeing the reverse. My PSA was normal in the face of Pirad 5 and Gleason 8 - unreliable for diagnostic purposes.
When I saw the MO, I am suspicious that he did not pay close attention to the MRI and biopsy reports and assumed my disease not aggressive because of the 2.14 PSA. That, and I'm 79. Not worth much of an investment.
I see him again in a couple of weeks. We'll have more of a discussion this time around.
His internist didn’t believe in psa tests! Stupid cancer society has determined not a valuable test. Hopefully they will change their minds. Probably has something to do with cost. Now we pay with his loss of life. $20.00 test could’ve prevented the love of my life from all this pain and suffering.
Yes indeed, my experience was similar, my doctor of 28 years retired so I was forced to find another,had been seeing a urologist every 6 months but somehow missed all the clues. The young doctor was not as he said much on tests so when I came up with a swollen lymph in my groin he thought it was a strain. Not until I got to see a old friend and doctor did he do my blood panel and found my alkaline level was 900 and ordered scans. You got it by that time I was Stage 4 . Guys don’t wait when something is feeling wrong.
I answer from two perspectives: as a patient and as a former primary care physician.
YES we all have the obligation to take charge of our own health and health care. We have a world of information at our fingertips and it is inexcusable to assume that our caregivers are as interested in our welfare as we are.
PRIMARY CARE MEDICINE is the most rewarding and the most grueling part of medical practice. I loved it. But the "progress" in recent decades of electronic medical records (EMR) and managed care has placed huge barriers between the physician and the patient. I am sorry that my colleagues think it is OK always to be running behind. But it is usually because they are taking the extra time their patient may need for talking and for questions. It is an impossible dilemma. You would be amazed at the numbers of physicians who have to take their laptops home at night to satisfy all the data entry required by the EMR. None of this excuses sloppiness, excuses failure to do a DRE on every male patient and to monitor PSA according to the guidelines.
I think that most physicians take the relationship seriously. Some do not. I think that my MO takes me seriously but we also argue about his promotion of "standard of care" and my questioning the real benefits TO ME of standard of care balanced against "quality of (my) life."
I've read every reply to you here and there are so many valid points. But reading your story, the most valid point is that you were passed by. You must have felt awful and embarrassed at what was going on with your daily experiences and despite crying in the wilderness to be heard, you now have this cancer.
Doctors are human, that we all agree, but they take the oath, that should mean something, but if along the way they no longer feel that they can have empathy with their patients, than its time to find another job.
I had a similar experience to you and when I got a second opinion from another G.P. things hit the fan and as a result, well, we on this site, are all in the same boat together.
Perhaps also we are our own worst enemy, I didn't even know what a P.S.A. was, the first time I noticed that things might not be correct was when I couldn't pee as high as our eldest grandson up the side of the barn ( bad Pop's, bad influence ) . 👍🏻
But if you didn't have the knowledge, how could you take charge or " ownership " ?
You are still here our brother and that therefore, means you still have the arsenal to fight and much more support than you did when you got that lousy diagnosis.
By the way, I am still looking for a different urologist 😳.
Thanks for your positive support. It was a good start to the day to read your reply. Good luck with finding a good urologist. Seems that I got lucky here and was referred, by chance, to one of the best. He is a specialist in Green Laser Light "re-bores" and has done a great job. I feel 100% better that positive progress is now being made after the past two years in the wilderness. Am peeing a lot better--a great conversation stopper!!!
I am very sorry to read of your experience. There seems to be a real lack of competent primary care physicians who will do the annual PSA testing,as it is not "standard protocol".
On the flip side, I had a doctor who did annual PSA tests and missed one year of rise in my PSA with an outcome similar to yours.
It is not happy news but we can only look forward if we want to enjoy the time we have. If we do all that we can to maintain a healthy immune system, exercise and stay engaged doing things that make life meaningful, I think we really can make it count in a way we could not understand before PCa.
Please continue to read ans post on this website and you will learn much. It offers both real scientific data about statistics that can scare the hell out of you and stories that help you understand that many have lived very long and good quality lives (far more than any of the charts and studies have shown).
I believe that educating ourselves and having someone with us (our patient advocate) at all medical appointments is very important to steering our treatment in a way that makes sense to us. Also asking critical questions about treatment options and quality of life issues is very important to making informed decisions.
Chris, I went through much the same scenario, it is unfortunate that the first line doctors are following the recommendation of the American Cancer Society, who say the PSA is unreliable. Please tell all your friends and relatives to insist on a annual PSA test, so what if it may be wrong about cancer presence, it also can save your life. Once it has registered above normal another in three months will either confirm or require more testing. I only wish my doc had ignored ACS and kept giving me a PSA. We may have caught it early and got to it in stage 1 I stead of stage 4. If it wasn't for the fact that I don't want to hurt a good organization,, I would get a good lawyer and sue because they are wrong on this issue.
Do the annual PSA test and DRE but realize that a single figure for PSA means NOTHING!! It is only the trend line over a period of a few years that can tell you something. I wonder if any doctors know anything about statistics. My own experience: 2002 - PSA 0.72, 2005 - 0.50, 2007 - 0.60, 2008 - 0.52, 2009 - 0.67, 2010 - 1.04, 2012 - 1.44. That's when I hit 70 and they stopped testing. Fast forward 5 years and as a result of difficulty urinating, I'm diagnosed Gleason 9, stage 4.
So I call all my buddies and one of my grad school classmates (10 years younger) had almost exactly the same PSA history! It was uncanny. But he gets his health care at Sloan Kettering and his father-in-law is an internist at Mass General so people looked at those numbers and said something is happening. He's been cancer free for ten years. That could have been me if my primary care quack did anything other than look on page 136 of the Standards of Practice manual.
My point is his doctors looked at the trend line where as my homicidal quack just focused on a single year's number. I've had over two years ripped out of my life and I'll die several years before I would have otherwise. What is, is and you have to deal with it. But it's like someone stealing your wallet. I wouldn't be human if I didn't feel resentment towards the people whose professional negligence put me in this position.
As to the argument that PSA is not a reliable indicator, true. But what else do you have? Do you just wait until someone is stage 4, Gleason 9? And then "manage" it until the guy croaks? Find ways to use it better, don't just throw it out.
I know, we're old guys and nobody gives a rat's about old guys. But I care about myself and I don't care about doctors.
I agree--essential. Its about time we were given this information and not have to ask for it. The days when doctors , priests and lawyers spoke and wrote in Latin so that patients wouldn't understand them, let alone argue with them are well and truly in the past.
I want my PSA history and am going to ask the pathologists for it.
In 2010, my primary physician tried to talk me out of a PSA test, saying it often leads to misdiagnosis, etc. This line of thought was being pushed by the U.S Preventative Task Force at that time. I said, test it anyway, and it came back as a 3.0. He said, "you don't have anything to worry about, no family history, etc". Right there I should have found a Uro, because I didn't test again for eight years, then bam, a 23, shock and regret. I hadn't tested partly due to my trust in my PP, and a false confidence I was in good health from being very active. Live and learn.
As a PCa sufferer who has been in remission for 5 years, I have spoken at dozens of support groups, Probus Clubs, Rotary and other seniors groups. many, many men tell me how unreliable the PSA test is. They get this from their doctors. In my strong view the PSA test when done regularly shows a trend that if present, accurately identifies that something is going on. It is important to always have the test analysed in the SAME lab, as protocols vary between labs. In my three books on PCa, I strongly recommend PSA testing. I know about the QOL impacts on men diagnosed with slow growing PCa and being overly aggressively treated, but that is another issue. At least men with G 7, 8 or 9 are found and hopefully receive life-saving therapy.
Further, I am of the view that with the growing number of 2nd or 3rd generation therapies available, few men should die of PCa today. However, to achieve this outcome the patient (or his immediate support team) need to grasp what options are available to them, and not blindly follow the SOC generally offered.
My husband was in his mid 40's when he went to his GP the first time for hip pain - no tests, xrays or MRI just some steroids so he suffered with it taking tylenol when it got too bad. He went back a few years later and the same thing. Steriods and told he probably had arthritis. He didn't go back. Then our insurance required us to get our cholesterol checked once a year. He went to a GP and was prescribed cholesterel meds. After three years he saw a new GP in the office who diagnosed him with low thyroid for his fatigue. That doctor then suggested a PSA - my husband was 56 and the results came back with a PSA of 74. Biopsy confirmed Gleason 7 - 4+3, three bone mets and extensive lymph node involvement. What's worse is that his dad had his prostate removed but never told us it was cancer and we didn't know enough to research it.
My take on this is that we had about 10 cancer free years. Yes he might have been "cured" with surgery but he would have also had to deal with all those side effects. Luckily nearly 3 years past diagnosis he had responded very well to Lupron/Zytiga/Chemo and has an undetectable PSA but of course the shoe has to drop sometime - hopefully not for many years. . .
I agree with you. But don’t kick yourself too much, as you don’t know what an early RP would have revealed. I had mine with a PSA of 4.2 and by that time it was discovered that I already had metastatic disease.
Even today I find the treatment decision is left up to me. I have two excellent doctors on my team, one recommending Provenge and the other telling me to forget it. (After a lot of research and reading in this site and others I decided to do it.)
There’s a terrible general misunderstanding that most if not all PC is mostly a nuisance and completely survivable. I can’t tell you how many times a friend...a respected Doc...repeated that most PC sufferers will die with PC and not from it. SERIOUSLY. THIS MF’er is a killer. It metastasizes like a caged rat breeds and is so multifaceted its overwhelming.
Ironically two of this Docs circle of friends have suffered this disease...one dead one (me) luckily surviving late diagnosis because of this boneheaded ignorance.
Same dr. 17 years. No PSA test. I didn't even know what a PSA test was. New dr. because I went on Medicare at age 66. PSA test, biopsy, CT, bone scan = Stage IV Prostate Cancer. Think the patient should get the test and be able to decide. Well regulated so drs. do the right thing. Not over treating because of malpractice fears or financial gain. Don't think the government should decide.
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