How did you discover your psa level that lead to treatment?
I was 46, in the best shape of my life (just completed a 3,613 mile bike ride), 6' 2" @ 214# and had a sudden on-set of ed, lower end of the testosterone range, fatigue and some low libido, just a few months after my ride and in a new relationship (2104). I met with a urologist who tested my testosterone 2X over 9 months and stated, "likely psychological for cause of ed".
He did inquire about any "family history of elevated psa", which I have none known. I asked if I should be concerned and he stated at "your age and no family history, no" and said that I may get it much later in life and taught me the phrase, "you're more likely to die with it than from it".
Fast-forward to May 2021 - I was speaking with a functional med and a friend who was taking TRT. I ordered a blood panel online through WalkInLab since Kaiser Permanente didn't cover all of the tests on panel. I inquired about the PSA test and Kaiser Permanente told me that it wasn't covered and not considered "preventative care".
The WalkInLab test returned a PSA of 15.2............. and that is where my prostate cancer journey started. Surgery in September 2021 (4+3 - 16.3 - svi - pni - epe - tertiary 5 at the bladder neck - 36 lymph nodes clear). Then recurrence in April 2022 with a PSA that went from .1 to .4 in 9 weeks and then Lupron w/ ebrt and abiraterone.
One hell of a learning curve for someone who had never been in the hospital or on any meds for 53 years nor had family history or any other comorbidities.
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Cyclingrealtor
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Wow. Answering your question-mine was found on routine annual physical at age 63. Elevated PSA over 4 for the first time. More importantly Doc felt something on physical exam. Urologist felt same and biopsy confirmed.
I had to push for my diagnosis. My PSA was 3.5. I went to Uro due to frequent urination and erection at half mast. They wanted to treat me for BPH, ED was taken care of. I still didn't feel "right". I push for more testing and here I am Gleason 9 .
I had a DRE every two years for my military medical and passed every time. I began having difficulty with urination. I was due for another military medical in a few months so I didn't go to see a doctor right away. I mentioned it to the military doctor and he said my prostate was enlarged. I was 55, healthy, and had no family history of cancer. He prescribed antibiotics for what he believed was a prostate infection. He also ordered my first ever PSA test. We were both shocked when my PSA result came back at 103.0. I was diagnosed stage 4, Gleason 9, mets in spine and ribs.
Had BPH for a number of years in my 60's and my urologist kept bringing me back. When it jumped from 4.2 to 6.2 biopsy. Gleason 8. Very healthy until then but frankly that does mean a thing. Undectectable at this point but still have the SEs from radiation and Lupron. They suck.
Similar route here. Had BHP for a number of years. Yearly DRE clean. PSA under 4. I skipped my physical in 2021 due to Covid I’m 2022 Psa was 6.4. Urologist said possible infection. After 7 months of messing around finally dx’d gleason 9. SBRT finished in Dec ‘22 currently on a 18 month ADT prescription.
There's no screening for PCa in the UK at any age currently. I even had a 'well man' check up at age 60 and PSA was not included. My dad had BPH and when I started getting urination issues at around the same age he was I assumed it was the same thing. It got worse during COVID lockdown so I went to my GP and after DRE and PSA test (13) I was diagnosed with metastatic PCa.
They are finally now talking about introducing MRI screening for over 50s but it'll be years before it's up and running.
I’m from the U.K. where there is no routine yearly full medical check ups or PSA testing. I am psychologist specialising in psychosexual and relationship therapy (amongst other areas) - so I had quite a lot of info in my work. Also two colleagues who had PCa - and a couple of friends, so i made a point of getting a PSA in my 50 and then yearly in my 60s. It started to rise to 4.1 from 2.8 and so I got checked out MRI and biopsy and diagnosis at 69.
The shocking thing was how hard I had to push to get the PSA and was almost discouraged when in my early 60s as ‘it will just worry you for nothing’ and you have no symptoms. I wanted a baseline was my argument which didn’t go down well.
Also the retest after 3 weeks of the 4.1 went down to 3.4 so had it been that first time getting referred would have been really hard. The other issue is that i didn’t have any BPH or an enlarged prostate so I thought those who kept saying it’s probably just BPH or it could be an infection were wrong … lucky I pursued as it has turned out to be high risk G9 - luckily contained and more PSMA evidence of spread. If I’d waited who knows !
I despair at the lack of a national base line PSA at 50 and then routine follow up and screening program. Men’s health is only just getting the attention it deserves.
I also think that despite the up front cost and perhaps worry and danger of over treatment the U.K. should have yearly health checks including PSA but other blood and screening for preventive intervention. Health care that works on crisis management of diseases and health issues is both less effective, expensive and short sighted.
Here in the US the guidelines are that no man over age 70 should be tested. Had I followed those guidelines - and not listened to my bossy wife - the PCa might have gone undetected for far too long. The CDC advises against screening over age 70. And, here is a quote from the American Urological Association:
"When is it time to stop being checked for prostate cancer?
At 62 PSA was 3.0...Doc said you're getting older. ED also set in at th same time, Doc said it happens...getting older. 63 PSA was 3.3...Doc said, you're getting older. 64 PSA was 3.8, Doc said, you're getting older at 65 PSA was 6.2, Doc said, you probably have PC and I did.
My husband and I didn't even know what a PSA or DRE was. He was 49 at diagnosis- in great shape. Had BPH and was self catheterizing for over a year. His father has Pca (he doesn't really talk about it- but he's had it for 25 years- no surgeries etc) and my husband asked urologist if this all could be cancer. Urologist said he was too young for Pca. Had TURP to help flow and they found cancer. Urologist still didn't do PSA. Urologist put him on bicalutimide and gave us names of 2 oncologists. Needles to say, we did not follow his advice on oncologists. 2 weeks AFTER TURP the first MO opinion we got (we got 3) was stunned he'd not had PSA done.
Like you was probably in the best shape of my life. Age 53. I was very active in the gym weight lifting. Quite strong in my lifting. Simply asked my doctor about me having to urinate more often than usual at night. He asked me to come see him. He did a DRE and was pretty certain I had PC. He ordered a PSA test that came back at 30.5. I had a PSA at age 51, 3.5. The journey had began. Coming up on my 6 year on this journey next week.
I have journaled nearly every step in my journey in my bio. Best of luck to you.
I think a lot of us have been let down by doctors. My husband regularly saw a urologist for 3 years for a rising PSA and the doctor always insisted his PSA increases were due to his age and nothing else. By the time it was discovered, it had already spread to a nearby lymph node.
I wish I had known about this forum when his PSA started rising. We would have done things very differently.
DesertDaisy, Our feelings are very similar. Medical care in Southwest New Mexico is very poor. We had just retired early, were healthy, very active hikers, and built our own home and homestead in the mountains. When we moved , at 60 and 62, we weren’t worried about health issues. Doctors and other providers are few and far between here . Five years later he had his biopsy due to rising PSA and urinary symptoms. The urologist he’d been seeing for those years for BPH medication told him she’d call him in a week with results. When we kept calling after the week passed, we found out she went on vacation the day after the biopsy for three weeks and was out of the country. No phone call. We called office, they said their policy would not allow any other provider to give out results. There were 14 providers in this urology practice. This is despite her passing my husband off to a physicians’ assistant a couple years earlier, and even she wouldn’t give results. We kept calling. Doctor finally called at 4 weeks and said prostate cancer is present. She ordered a bone scan and no contrast CT . Again we were unable to obtain any results, as she had gone on another vacation! We finally called and insisted they give result. Got a call back, they said to come in and get an injection. Refused to tell us results of scans or what injection was for. We got on the phone, demanded to talk to office manager and used some very strong and specific language. Same response, except I was able to finally get them to say the shot was Lupron when I started using legal terminology. So we went directly to the hospital and got the scan results and biopsy and lab work results We made copies, faxed everything to Mayo Phoenix quickly and he had surgery within 3 weeks. So sad we delayed, and didn’t fire her sooner. Thank the gods for Mayo and the prompt and excellent care, and the professionalism from his providers we have received.
I was following my psa due to family history in male maternal relatives. Diagnosed at age 53. 76 now. I had no symptoms at all at diagnosis and also was in great shape
My husband's very first PSA rise was found in the context of a city-wide offer of free PSA to every man 55+. Subsequently, he had 11 years of negative PSAs until BPH forced a simple prostatectomy. The tumor was found in post surgical pathology.
I requested a PSA after I was getting up occasionally in the night and had one episode of urgency at work. I'm an RN, was pretty sure I didn't have UTI, but my DRE had been negative, and no PSA had been done prior.
My PSA never got high enough to be alarming (OTOH, I know men with high PSA but don't have cancer). My PSA had been trending up but my doctor wasn't alarmed. (From memory, it went up to about 3.3 then down to less than 3.)
I had some blood in my urine and nobody ever figured out why. The blood went away after a few days but a trip to the urologist led to the world's worst manual prostate exam. The urologist told me my prostate is hard, which is bad. Biopsy ensued, etc.
But it doesn't really matter. If you have stage 4 prostate cancer, go full steam ahead no matter how "good shape" you're in because that doesn't matter either. Couch potatoes get cancer and so do super athletes. Get the best info you can get, get doctors who listen to you and have empathy and best of luck!
@everyone thanks for sharing your journey. My heart goes out to you all as you wall your journey with this ugly disease! 🙏🏻
I share my story with many so other men so hopefully they're don't have to walk in our shoes.
My bike mechanic had family history and knew of PCa. He was on his psa and as soon as it went from 3 to 5 he had a prostatectomy. He was 52 and 23 years later, no issues. That is the journey I hope we can create for those behind us with heavy advocacy!
Lots of love to all of you cancer brothers on this journey! Be well!!!
Some urinary issues at 65 and my wife pushing me to go to the Dr and then seeing the PSA rise rapidly. Thanks totally to her, RP, then Erleada and Lupron and three years of moderate/mild side effects, but living live
I think mine started with what presented as tail bone pain. Thought it was office chair and not moving as much due to Covid work from home. In around same time also sudden onset ED. Also, noticed some urination issues. Combo of these issues led family doctor to refer to Urologist.
I was riding in a very crowded nyc subway train when the guy behind me said...... "Hey Bro I felt something back there, better see a urologist"...................The rest is pisstory..........
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 08/24/2023 6:35 PM DST
I'm 76. About 10 years ago I had a few small issues (infrequent blood in semen, half-mast only) and the urologist didn't do much, told me it sometimes happens, and gave me a script for Viagra.
Fast forward 5 years ago, my wife insisted I get a physical. PSA came back at 4, but the doctor thought it was okay as there was nothing felt on DRE, and no family history. Frequent urination and Viagra didn't work, but no big deal. I'm healthy and no other issues, so I thought, just getting old.
Annual check-ups saw a slight rise in the PSA, but again, nobody seemed concerned. The frequent urination was a nuisance.
This February my PSA was at 7.4. The DRE revealed "something". Sent for a scan/image, and it came back 'Benign'. So I was happy.
But my urologist was not. He still suspected something was wrong, PSA numbers increasing. Sent me in for biopsy in June; came back 4+3=7 and T2c. Now, THAT was a shock.
Had another PSA test a few weeks ago and it was 10+. PSMA/PET showed zero anywhere outside the prostate.
I've started Lupron yesterday, and I will be going to proton therapy, most likely over Thanksgiving and Christmas, in a distant city. Should prove to be a holiday season I won't forget.
My PSA was only 2.7 when a suspicious DRE (fickle finger test) got me sent for a biopsy at age 66. I had to badger my GP for that test. He was with a medical school and refused to order a PSA test at all. The urologist I got sent to was shocked at that. Blame the morons at the USPSTF for recommending fewer PSA tests for your shocking late diagnosis and treatment. Penny wise and pound foolish. They wanted to prevent "over-treatment of prostate cancer". Now patients are showing up already symptomatic and metastatic. Shameful and sad.
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