Just diagnosed with prostate cancer.

[1inquizitive]

08/2024 PSA 8.7, biopsy found 10 of 12 to be Gleason 9. F18 PET scan found it has metastasized. My curiosity, is it unusual for initial diagnosis to be, advanced very aggressive prostate cancer? Seems it should have been found before it reached this stage.

[Derf4223]

That sort of diagnosis has become more common with the drop-off in PSA screening. Speaking of which, putting more of your case details in your bio will help HU folks help you and is good kharma to boot. My staging was similar to yours. Advanced means advanced treatment is needed. High risk means high risk of spreading if not treated. Don't panic and read up on trials like LATITUDE, CHARTED, PEACE-1, etc.

[j-o-h-n in reply to Derf4223]

Pat on your back, for your good advice, Sorry I ran out of medals (my wife gave them all to me)..

Good Luck, Good Health and Good Humor.

j-o-h-n

[vintage42]

"PSA 8.7, biopsy found 10 of 12 to be Gleason 9. F18 PET scan found it has metastasized. My curiosity, is it unusual for initial diagnosis to be, advanced very aggressive prostate cancer? Seems it should have been found before it reached this stage."

You need to fill out the bio. If 8.7 was the first PSA test, there may have been a year when the cancer could have been found before metastasizing. Sometimes people do not seek attention until they have a symptom, and then find the cancer is advanced.

[Cancer2x]

Welcome! Take a breath! Reread Derf’s reply above. It is just the starting line on a long cancer road - a LONG road, with a lot of new stops along the way! We have been to all of those stops, so stick around and ask anything that might pop into you head about the trip.

If you want to know what’s on the road ahead, ask those coming back.

Good luck to both you, and your doctors!

[SteveTheJ]

"Should it have been"? Who knows? Was your husband getting at least annual cancer screenings (aka prostate specific antigen (PSA)) tests?

Everyone's story is different; here's mine.

I got the old-fashioned "bend over" test until that went out of fashion then annual PSA tests. At no time was my PSA >4, which is the threshold that indicates possible cancer. In late 2019, I had blood in my urine and went to the doctor immediately but the regular doctor didn't find the cause and the blood stopped after a few days.

I went to a urologist after that who suspected something might be wrong based on how fast my PSA was increasing so he did a "bend over" test which resulted in him saying my prostate is hard which is bad.

Prostate biopsy followed, Gleason 8, then scans, which indicated stage 4 cancer. And here we are.

I got in to see an oncologist with MD Anderson in Houston ASAP and I've been very pleased with the results ever since. My advice to you is to run not walk to see a good oncologist and go forward with their advice. Don't look back, don't second-guess, nothing will make a difference. Best of luck.

[TaylorMill in reply to SteveTheJ]

This reply is for both 1inquizitive and SteveTheJ

I had my first PSA test in over 10 yrs upon turning 65 and having my first Medicare physical. I was referred to Urologist who confirmed PSA over 50. Biopsy showed Gleason bad 7. Post RP biopsy in 2018 showed Stage 4 and spread to local lymph nodes. After extensive consultation post-op, treatment post op was 4 yrs of Lupron and bicalutamide and 39 radiation sessions for prostate bed and pelvic area. I was fortunate to have no difficult side effects from any of the treatment. Regular ongoing checks by MedOnc show ultra sensitive PSA <.006. Now as I near 72nd birthday, my MedOnc believes my health outlook is just as good as it was prior to diagnosis.

I mention this as encouragement that even with a Stage 4 diagnosis, available treatments can be very effective!

For SteveTheJ - I am here in TX (Bellaire) - not sure if you are local? I followed through with treatment at Houston Methodist though also considered MDAnderson. My primary care dr and referred specialists were in the Methodist system and seemed to all make very positive impressions me. Upon recent check - Houston Methodist considers themselves to also be a PC Center of Excellence though seemingly not referenced that way by other sources I read

[old64horn in reply to SteveTheJ]

Steve, I had my PSA tested annually an when it jumped from 2.5 to 3,7 in one year, my doctor advised to see a Urologist who repeated the test and followed it with a biopsy which came back positive for Gleason 8 cancer. the rapid increase in PSA is always a red flag when it comes to PC. Good luck

[Chipichape1]

if you had periodic PSAs, every every six months or every year, at one point, your should have been alerted of the rise and proceed to do biopsies.

[1inquizitive in reply to Chipichape1]

I had biopsy 2008, all 12 samples were clear. My PSA is usually around 3 until April it was 5.6 and August 8.7. Until April the Doctors showed no interest. I don’t know if it is relevant for the past 3 years I have had near constant UTI symptoms with urine WBC coming back as too many to count and culture showing multiple types, so no antibiotics prescribed. No diagnosis/explanation offered.

[TuffNuttoCrack]

PSA isn’t a good indicator for an extremely rare aggressive cancers. The PSA tends to run low. Mine was never got above 2 to 3 and I had the checkups every six months. In between checkups it snook up to 6 but symptoms like a crushed ureter showed up in a blood test, resulting in CT scan. All because a brain MRI contrast agent wouldn’t pass thru the blocked ureter, and caused one of my legs to swell 1 1/2 times its size. A cascade of tests followed.

The good news is that your cancer may respond well to abiraterone and lupron.

[Yzinger]

My exact diagnosis. Aggressive metastatic. 52yrs old. Sucks my friend but some good group here.

[dmt1121]

I had the same reaction when I was diagnosed. I was diagnosed in 2016 with prostate cancer at 57 with a gleason 9 (5+4) and then had a robotically assisted prostatectomy and found that a lymph node was positive and it was now systematic. I did chem and lupron until I stopped to allow my PSA to rise , so I could get an Axumin scan. It showed a tumor near my bladder and one on my left femur that was treated with SBRT. I have been taking Zytiga for five years since this was discovered, which is now beginning to fail.

My PSA was initially suppressed by another medication I was taking, which made it harder to detect. However, this was a known side effect of taking this medication and my primary care doc did miss the rise in my PSA by one year.

There are many reasons one gets diagnosed with aggressive and metastasized disease based on whether they had been getting annual PSA testing and digital exams, other missed symptoms, etc. The most important thing is to educate yourself about the disease and treatment options to address it quickly and effectively.

Good luck.

[maley2711]

What is your history of PSA tests and the results? Knowing that is the only way I could comment on where you find yourself now.

[1inquizitive in reply to maley2711]

In 2000 I had colon cancer which had not metastasized so a resection was all that was done. Later in 2000 PSA was 2.3, 2002 PSA was at 1.6, 2006 PSA was 2.7, 2008 PSA was 1.2. Until April 2024 I have found no Veteran’s Administration hospital records of PSA. In April I had a Lumbar fusion L1 through S1 to repair damage of Cauda Equina and still have nerve pain and weakness from the left hip to the left foot. PSA April 2024 was 5.6, PSA August 2024 was 8.7. Until August 2024 no action for PSA was done.

[maley2711 in reply to 1inquizitive]

So, assuming the VA did PSA tests during that long interval, evidently your PSAs were considered non-actionable. As for your 5.6PSA in April , and your age 76, Kaiser has an action point of PSA 6.5 for men age 70+. However, many insttitions continue to use PSA 4.0 for older men.

[Atdabeach]

It seems to me that too many of the responses here (and maybe you too) are focused on how you got here, rather than how you go forward. I too was failed by my earlier medical care (urologist relied on "free vs. total" PSA, until a biopsy at PSA 20 showed 10 of 10 cores positive and Gleason 5+5). I was very upset, especially since I had gotten PSA tests religiously for many years, but I eventually adopted the attitude that "stuff happens" and I need to focus on the future, not the past. This forum has been a big help in that effort.

In my case I had metastasis to pelvic lymph nodes, treated by full pelvic proton radiation, and 2 years of ADT (Eligard, abiraterone + prednisone). 2+ years past diagnosis, my PSA is still undetectable (largely because so is my testosterone), and I feel good, except for the inevitable weight gain, fatigue, etc. I fully expect I have not seen the last of my cancer, but am reasonably confident that further progress in the coming years will enable me to fight it for a long time!

[FormulaRob in reply to Atdabeach]

I’m only 30 but plan to start PSA tests soon. Can you explain the difference between freevstotal

Sorry Thad this happened to you despite the precautions taken.

[Atdabeach in reply to FormulaRob]

OK, I'm doing this from memory, so google it if you want more/better info. Most of our PSA tests just measure total serum PSA , but some of that is "free" in the bloodstream, while some is bound to other compounds or whatever. Since causes other than cancer (mostly BPH I think) can raise PSA, the free vs, total PSA ratio attempts to screen out benign causes. As I recall, within a certain range of total PSA (maybe up to 10), if the free vs. total ratio was above 25%, it was "not likely" to indicate cancer. As my PSA gradually rose over the years, my free % remained over 30, so my (now former) urologist said don't worry about it, as he didn't like to do unnecessary biopsies. Having heard how unpleasant they could be, and being naively willing to trust medical professionals, I didn't argue with him. (This was also during the pandemic, when we were having televisits.) Once my total PSA was in the teens, he said "I guess it's time to do a biopsy," and by the time we got that scheduled, my PSA was near 20, and the rest is history. I fired him, called Johns Hopkins (only a couple of hours from me), and started treatment. Needless to say, if I had it to do all over again ...

[FormulaRob in reply to Atdabeach]

oh man I feel so frustrated for you .. how could we not trust the experts .. we can’t know if they’re good or bad until something like this happens making it painfully obvious.

My father had the physical exam in February and the doctor said nothing to worry about .. months later after being unable to urinate they scheduled him for a PSA test and got it back at 226. Doctor even wrote a note in the report covering his ass saying he checked thoroughly and it did not feel abnormal back in February .

Initial prognosis just off the PSA was 6months to a year. Scary stuff but after the scans they realized only localized spread luckily. Anyways I won’t go into anymore detail.. he’s handling treatment well and has another year of ADT left. Just thought I’d share so you know you’re not alone with dealing with doctors that just don’t care

Thank you for the info your time is appreciated

[4tran4]

I had a somewhat similar diagnosis in late 2016, PSA 45, Gleason 4+5, positive lymph node on Axumin scan. I had RP and radiation with just 6 months of ADT.

My PSA has been <0.01 ever since. I am very fortunate, but there are a lots of good treatment options now. Be positive, work out a lot, watch your diet, and follow this group for great support and guidance. Educate yourself and get treated at a major cancer center of excellence if you can.

[FishAndBruise]

Very similar story, PSA tests every year, always around 1, suddenly last year during routine physical PSA jumped to 32, retested, was higher, a month later was 53. GP didn’t detect anything during DRE. Had biopsy, results were Gleason 5+5, PSMa , bone and CT scans showed many many bone Mets and lymph nodes. Got on ADT right away and then triplet therapy. Had spot radiation for lower back Mets which helped a lot. 7 months after initial PSA test my PSA is now undetectable and new scans show Mets shrinking. Going to be a long road but like another poster commented, it doesn’t matter how we got here, now we just have to keep fighting.

[groundhogy]

yes, i think men should get PSA with every std blood panel. Why don’t they? Its cheap

[TuffNuttoCrack]

Its not unusual I have found the more I research this. We are just less fortunate. I have seen a podcast where two people having PSA less than detection have cancer metasticized all over their body. The more aggressive the cancer the less PSA is expressed. That was my case and they could not determine a gleason for poorly differentiated cells. You can look up gleason score and see what the cell distribution looks like.

So going on PSA alone is a fools folly. I've been offered a vacation with a trigger point of 0.3 but the above info in the podcast.... I would suspect their arbitrary point might wind up with me being in much more dire circumstances.