Hello everyone. My name is Al and I live on the northshore of Long Island in Nassau county. Two months ago my GP was on vacation and I was feeling more tired than usual (I'm 81) so I asked his stand-in to get a blood panel taken, which she did. When she read me the results a PSA at 188 told me I must find a Urologist immediately. "When did you have your last PSA?" she asked. In the past ten years my GP had me have one or two blood panels taken per year. On NONE of them did he request PSA levels. Ten years? Many of you know the absurd so-called justification for concealing this antigen test from men over 70. Their reason is beyond specious, it is simply stupid, LACKING REASON. We men need to know what is happening with our bodied, particularly when potential years of our lives are at stake. Had I caught the cancer at stage one or two instead of stage four, it could have made a significant difference. Lawyers I spoke with cited government statistics and medical doctrines as reasons why they would not consider a malpractice suit. So be it. I know where they stand. I liked my GP and would have felt bad suing him. But I do believe his withholding the PSA tests was not in the best interest of my health.
So far other than hot-flashes and fatigue I feel no side effects from the hormone treatments and am living my life in a more-or-less normal routine. I write screenplays/movie scripts and am still active with three scripts currently in progress. I play violin and trumpet and have enjoyed participating in music-related activities most of my life. Diane and I kayak , but did not get out much this past summer. She is more outwardly upset about my cancer than I am. I don't have any time or energy for despair or recriminative anger. The key is to enjoy the remaining time we have and use it for productive/creative ends. I figured that out before finding out I had cancer. I focus on future happiness and try not to live a "What if" life. I'm not sure what to expect--the when and how the cancer may become a problem. It's hard not to worry a bit about it.
Diane and I plan to move to the Northwest this spring or summer--Oregon or Washington. Diane has to sell her home here first. I look forward to hearing from others and if you happen to live near me meeting for a coffee or beer.
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Almabari
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"I focus on future happiness and try not to live a "What if" life." - that should apply to all of us.
What a wonderful attitude. I agree and have the same anger for the idiots who decided men over 70 don't need a PSA test..... Since my father had PCa - I insisted on a regular annual PSA test starting about 60..
Even with annual reads my PCa didn't express a lot of PSA, so when my PSA jumped from 0.1# numbers to 3.4 numbers my primary care physician wasn't concerned. I attribute that lack of concern to the forced 15 minute scheduling for an MD visit that the insurance companies and Medicare pay for. The testing in my case was done at Quest Labs - and at the time they only provided history of prior results in numeric format - and going to 3.4 didn't trigger a warning message (it would have to go to > 4.0 for the warning).
Oh well, I think I'll try to focus on future happiness and try not to live a "What if" life.
Thanks Don. I will try in some manner to reach out to the medical community and try to insure that us old guys get the same respect and care as those under 70, I'll write some letters and meet with a few local hospital officials. It may not do much good but I feel I should do something. Has the group ever initiated any form of class action suit? If we pooled those who had similar experience with PSAD (new term: PSA deprival) deprival at an older age, perhaps a law firm would take interest. I don't know who the defendant would be. There is no one source responsible for this antiquated practice of withholding PSA testing from older men. Be health Don, and smile when possible.
I am 85 and was tested regular , sometimes twice per year . My PSA rose to 7.3 and " I requested I see an Oncologist " -- In fact my PSA was 14.6 due to the fact I was on Dutasteride medication for BPH and you have to double your lab PSA numbers .
No one ever told me about the Dutasterude douubling effect - I believe my GP was unaware of this fact . I am on Active Surveillance and considering my potential treatment options . Both my brother-in-laws , one in the USA , the other in the UK both were diagnosed in their mid eighties with Stage 4 . They too had stopped getting PSA .
Welcome to the roller coaster ride of prostate cancer treatments. Be strong of heart and enjoy the attention of a slew of doctors and assistants. Life changes, so you didn't get the boat wet this last summer, but I bet you still took the opportunity to enjoy the sparkling waters from the shore. Play on as long as you can. I just had to give the whip crack to the youngest percussionist for my last Xmas concert. The back pain is now constant and I could barely walk across the stage to change stations. Music is the therapy I miss the most.
BAdrummer keep the beat as long as you can enjoy it. I've played trumpet for many years in different groups. For my 81st birthday I gave myself a tenor saxophone and now, two months later I'm cranking out the standards. I have no pain yet but I know it will come eventually. Diane and I still can kayak for an hour or two without fatigue. I get tired first. Yes, what doctor and treatment will be best for me. I am deluged with advice about who is best. Sloan Kettering doesn't take my Humana insurance. , I am on a hormone-based therapy inhibiting the production of testosterone. Is it the best for me? I don't know. I don't want to waste any of my timeleft chasing around for the holy grail of treatments. So I try to enjoy each day.
Thank you for your post. Best wishes and remember to smile whenever possible.
I’m 65 YO and found out my doctor stopped checking PSA levels 12 years ago with my annual blood tests. I was not aware of this until a friend was asking me specifics when I was diagnosed stage 4 this last summer. I felt ill when I was looking over the past lab reports and not seeing PSA listed in the blood panels. I did call a lawyer, but he said it would be a really tricky case unless I had an in person discussion about PSA testing with my doctor. I really regret not being more aware of the specifics of my screenings. I have read the rationale for not doing routine PSA screenings, but from my perspective that now seems insane. I quit my medical provider and am now getting care at a cancer focused organization here in California where I live. Im hoping to run out the clock with good care and get as many good years in as I can. Other than prostate, I have two abdominal lymph nodes involved. I’m now a lifelong member of this club that no one wants to be in. I don’t post much here, but your story reminded me of my own. Wishing you success in your battle Al!
Thank you Slick714. Your story is similar to mine. The rationale for withholding PSA info from older men patients is absurd and borders on criminal. We old guys are tough enough to be told the truth about any condition that threatens our health and longevity. To willfully deprive us of such information should not the prerogative of a GP. Absurd justifications should be challenged. I will make some efforts in my remaining viable years to advocate for the abolition of this archaic travesty. Best to you and remember: smile whenever possible.
Good luck to you. My husband is 64, wasn’t tested for 10 years either and ended up with PSA 36. After surgery, he was staged 3b and he had a recurrence a year later with four sub centimeter abdominal lymph nodes. He is on the same regimen as you and had salvage radiation to the pelvis, and prostate bed and also the nodal chain to the abdominal area with a focus on the PSMA positive nodes. I hope they will target your nodes as well. You are oligometastatic, so I pray that between both treatments, you will live for years and years!
Thank you Alicat1 for your post. I plan to put some effort into changing this archaic policy o PSA deprival by some GPs who need to realize there in no option to withhold vital information from patients because the are old. Best wishes, smile whenever possible!
Thank you for your post, John. I am looking for a way to change this quaint custom of depriving older men of vital information regarding their health and longevity. We might see it abolished if we live long enough.
Best wishes to you and remember to smile whenever possible.
Same here Al. I had been seeing GP for over ten years. I wasn't aware of PSA screening. He did plenty of blood work & said all was fine. Until one day my alkaline phosphate levels were high and he mentions checking for prostate cancer with PSA test. By this point it had metastisized to bones. I also checked with an attorney & was told same rhetoric. Wish there was something we can do to stop this from happening to others. Now I just tell men I come in contact to make sure to check their PSA. Wish everyone on this group long life & happiness.
Hello Voodoo33993. I am looking into effecting a change in the archaic custom of denying critical health information to older men. It is patently absurd. The specious rationale for withholding PSAs from old guys should be a crime. It potentially can rob years of longevity from us. I've got some years and energy left. I'll put some into challenging this travesty.
Thanks for you post. Best wishes and smile whenever possible!
Sorry what you are going through, and wish you the best. There are treatments available.
The USPSTF recommendations for PSA were always questionable, and those on that committee weren't even urologists from what I understand.
The rate of advanced prostate cancer has been increasing in the United States since the USPSTF (United States Preventive Services Task Force) recommended against routine prostate-specific antigen (PSA) based screening, suggesting that fewer early detections may be leading to more cases diagnosed at later, more advanced stages; this is particularly evident in the rise of metastatic prostate cancer rates.
What we need to learn from this is to be our own advocate, educate ourselves, and if they don't order PSA tests, we need ask them to.
Patients can order these tests themselves through LabCorp, Quest, etc. if their primary care refuses to order it, though insurance will probably not cover it.
Here is a site that uses Quest, and the cost is around 27 dollars for total PSA:
If you have a reasonable Primary Care then you should have no problem having the primary care physician order the PSA test where insurance will cover it.
Yearofthe crow I could not agree more. This archaic policy of denying PSA info to patients is absurd and beyond reason. We old guys can handle the truth about our health--it's not up to a GP to decide for us. PSAs should be mandated for mature men. I will work in my region to change this travesty. Thank you for your post and smile whenever possible.
I was diagnosed in 2000 with a Psa of 4.19 and Gleason 3+3. I had no treatment until Psa reached 5664 and bone pain was high. When I saw my new urologist for the first time with Psa of 900 I asked him at what psa do I have to start Lupron. He told me there is no ser number because I can’t be cured so we treat quality of like but since I had back pain he ordered an mri. The mri showed two compression fractures so Lupron was started. This was May 2022. There are guys on here that did SOC and are right where I am except they suffered side effects of treatment for many years but I didn’t. 30% of 50 year old men have cancer cells in their prostate as proven by autopsies. That number jumps to 80% for 85 year olds. You should however been offered the Psa test and explained the risks and rewards. Something to think. On average ADT lasts about three years and then chemo and other drugs follow.Had you been tested ten years ago and put on ADT that treatment may have become ineffective already. I hunt, fish and canoe by myself and that includes dragging a deer or canoe by myself. Please understand I sympathize with your diagnosis and feel you should have been given the choice to test but the guidelines do save many men from the anxiety of knowing they have a prostate cancer that may never cause any symptoms if just left alone. I wish you the best and tell you even with a Psa of 188, there is hope. God bless.
Thank you "Prof", I agree that revealing a life-threatening condition may frighten old men. I know because I'm one. But withholding some vital information with the rationale "since there is nothing we can do about it, let's not tell them" doesn't cut it. If fit scares us that is to be expected, but we old guys are not so fragile as that. We at least, with knowledge of our malady, make informed decisions and not leave it to a doctor to decide for us. Thank you for your post. Much of what you say is very valuable.
It seems to have been protocol a number of years ago to limit PSA testing on men due to false positives. I, like you and many others were not tested. My GP of 20 years did not test my PSA for 11 years. I moved to Arizona in 2018 got a new GP to test was back in Vogue and mine came back 12 I did have prostate cancer in four quadrants that metastasized.Best luck.
Thank you Carbide. I am going use part of my remaining years to make public this archaic practice. We old guys ain't that fragile that we can't handle the truth about our illnesses. It's up to us to decide treatment or not. Not a GP who feels it is better to conceal the information.. Thank you for your post and best wishes for future happiness. Smile whenever possible.
I get it. I'm a retired Professor and only did I discover by accident that my PSA was 72, and after a biopsy did I find out that I am stage 4, Gleason 9, and that prostate cancer was a threat to my life. I'm 87 doing chemo, after other drugs have failed. I got the same stories from the medical profession about detection. IMO, the truth is that there's no money in preventative medicine. Poollover
I taught at Ohio U. back in the late 70s--Comparative Arts. Their rationale for keeping this vital information (PDAs) from us old guys is absurd and in some cases criminal, costing some prostate victims years less to live. Thank you for you post. Be happy and smile whenever possible.
Some great discussion here Al about PSA testing. Here's my own post on the topic from a couple of years ago, although there is a certain sense for all of us here that it's all water under the bridge 😃.
As for accountability for the decision makers and lazy doctors? There isn't any. And what about changing policies? It's not as if the test is super expensive. And above you and others alluded to the crummy logic that justified the whole thing in the first place.
PSA Scandal - Lost Years of Life - Updated re: QoL
YOu have it 100% right JohnintheMiddle. It bordeers on criminality to withhold this vital information from us old guys. "Gee whiz if we told them they might get upset." Bull! Doctors should not conceal vital information from those ostensibly in the care.
Best wishes and remember, smile whenever possible.
Hi Al--I've spent many happy hours cycling the North Shore of LI out of Old Westbury, up toward Bayville, Mill Neck, out to Northport etc.
My dad was in his late 70s or so when he clocked a PSA of 5000. He responded well to ADT. He also had lung cancer in his early 80s. He made it to 91, fully independent to the end, and when he went, it wasn't the prostate cancer or the lung cancer. Hopefully you will have an equally good response and live for many years.
You are in the best area of the United States to get help regarding your Pca. My advice is to see a doctor here in NY (Manhattan or Long Island) at Memorial Sloan Kettering Cancer Center. I've been a patient at MSK for 22 years. (Diagnosed in 2002 - age 66) and I know you will get the best and latest treatments there. I live in Queens and my M.O. is located in Manhattan but I also travel out to Long Island for routine shit (blood tests, some minor treatments and some scans). In fact I am scheduled for a treatment in Uniondale (near the Coliseum) on Tuesday 01/21/2025 12:30 PM EST (I have an earlier appointment to see my Orthopedist - Hospital for Special Surgery) at 11:15 AM EST also in Uniondale.
If you wish to meet at MSKcc let me know, but I warn you I am not a Pca technical guy but just an old guy who's hobby is humor. When you enter the building just stop at the registration kiosk and ask for HANDSOME (that's me).
Note: MSK has two facilities in Longgg Island: Uniondale and Commack.
Thank you J-o-h-n. Having a sense of humor (even galgenhumor) is so important to getting by in the current state of the world. There are problems afoot. I never planned to live forever and try to enjoy every day a can. I, too, have a hobby of sorts.: I write screenplays, scripts for movies that will, no doubt, never be produced. It's sort of a way to dodge retirement. I do promote them by email and a web page if you're interested, mygrandillusions.com.
Thank you for your post. Best wishes and remember: Smile whenever possible!
Did your GP specifically tell you that he wasn't checking your PSA intentionally? My brother had a similar situation with a woman GP, but it was just an oversight on her part. After he experienced symptoms of PC and it was verified that he had it, she apologized for not getting PSA readings with his blood tests over the years. He's doing OK now but is on permanent ADT. 🦊
Interesting. I had ongoing PSA tests since I was 70, or so with no indicated need to treat until I was 82. Difference being I was taking Testosterone supplement. Not SOC. When it happened I asked for aggressive treatment and got it, radiation, ADT + Zytiga. Two bone Mets. Now I’m told no active centers.
I guess my point is that early detection can lead to early treatment and with luck less damage and early remission. More benefits than the saved cost of not monitoring..
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