first clue was psa 250 then 300 on re-check. Psma showed local mets to nodes and suspicious to nodes in back. Started lupron 2 weeks ago. Just had biopsy which showed gleason score of 4+3= 7. Im happily shocked, was prepared for a 10.
i’m not sure what to even think about this. Any of you big brains further down the road have any insight ?
Was the biopsy before or after started on Lupron? Pretty unusual for mets with 4+3. Maybe get a 2nd read of your biopsy slides at John Hopkins.
after i started on lupron. In 2013 i had psa of 4.1 and kaiser never ordered another test. I suspect ive had it for 10 years. Im paying for a second opinion at UCSF a cancer center.
I find that very hard to believe. Ive been with Kaiser since 2014, and have been offered PSA tests _every_ year since then.
Were you seeing your PCP regularly?
You were 65 when tested in 2013? and Kaiser never again asked if you'd agree to be tested, but then at age 75 they asked you???????? Did you see a Kaiser GP annually since you reached 65??? Many men don't, and then PSA tests are not done of course.
Congrats on havinf UCSF nearby for 2nd opinions.....perhaps CA regulations permit you to qualify for a Medicare supplement plan, in which case you could switch to traditional Medicare and have UCSF as your primary cancer care!!!!
for 2 years ive been complaining about what i thought was BPH. Gp gave me urine test to check for infection then offered flomax. I said no and started on low dose daily cialis on my own (gp would not prescribe so i went online). Worked great. For 6-8 months. Then i started having dry ejaculation - told my gp who sent me to urologist who then prescribed cialis and sent me for a psa test and here i am. I am not going to go down the road of woulda coulda shoulda except for this one time to get it off my chest gp should have given me psa test and I should have been a more educated self advocate.
Sounds like they dropped the ball on you. Like too many men on this forum they failed to adequately screen you (as in annual DRE and PSA tests) and now here you are. I had a very good GP who administered DRE and PSA tests starting in my 40's. When I changed doctors with a new insurance plan I had to badger him for a DRE and he refused to generate a work order for a PSA test. He had been browbeaten by the USPSTF. You may have heard about those morons.
Guidelines now say that you should be offered a PSA test, discuss pro/cons with GP, and then YOU decide. Did any Kaiser Doc ever offer a PSA test at any time in past and you refused? You should not have had to ask for the test, though in real world, in hurried appointments, things can be unintentionally overlooked.
If the Kaiser Doc was negligent by not asking you what you would like to do, then I do hope you can perhaps find the time to let Kaiser management know about that . That is the only way things change for future men !!! They are lucky that patients like you don't initiate claims for damages...I learned that it is not enuf to prove negligence...the tough legal test is proving damages!
Good move in getting a second opinion at UCSF. I have Kaiser in San Diego and getting second opinions outside of Kaiser at Scripps and UC San Diego was the best thing I have ever done. You will not get the most aggressive care from Kaiser unless you push them hard. Kaiser’s fine until you’re sick…
Since I'm also with Kaiser, what did those other places offer that Kaiser did not/will not?
Kaiser Urology refused to do genomic testing on my Gleason 9 biopsy samples despite that being a recommendation for my situation by NCCN. Same thing with genetic testing for heredity cancer genes…”it’s not standard of care” was what the Urologist parroted. It’s not Kaiser’s standard of care because those tests cost big money.
Kaiser’s supposed uro-oncology “expert” they had me see after I complained about not getting an in person appointment to discuss my newly diagnosed Stage 4 cancer (imagine that, an in-person appointment to discuss a new cancer diagnosis) said “just stick with our standard of care”. He also said “there are no clinical trials for you”. He did not even mention triplet therapy for me or darolutamide.
Scripps, UCSD and an independent non-Kaiser urologist all said considering my age, otherwise great health and aggressive cancer, I needed triplet therapy plus radiation. Kaiser never even brought up the aggressiveness of my cancer. Also, there were two clinical trials I found on clinical trials.gov within 10 minutes after I started looking. One in San Diego and one in Los Angeles The lazy Kaiser Uro-oncology “expert” didn’t even look (He also told me other stuff that was totally incorrect.)
I am very fortunate because my Kaiser Oncologist was on board with following the recommendations of Scripps for triplet therapy so that’s what we did. I’m also fortunate because in my area Kaiser refers radiation to UCSD My Kaiser Oncologist, Scripps and UCSD have been outstanding Kaiser Urology, far from it At Kaiser, often SOC stands for “standard of crap” when in the rest of the world it means “standard of care”. You have to really push Kaiser doctors to get the best treatment for you If you don’t, they are going to just go with the cheapest option which is great for Kaiser but may not be the best for you
Thanks ...interesting ! I think this may be at least a partial explanation. Kaiser is actually an insurance organization, and then a separate MD organization. I believe Kaiser MDs learn what the insurer will cover, assume patients will only want what the insurance dept will pay, and thus generally refrain from offering what they believe will not be covered. Now, this is my speculation....a few comments from Kaiser Docs suggest this may be true.
Kaiser willingly offered me a "knockout" anesthesia (Propofol) for my biopsy, whereas the medical school urologist here refused to do so......" Most men have no problem without"' BS.
BTW, per my discussion with someone on the insurance/benefit side of the company, Kaiser should offer you anything that Medicare covers. I believe the genomic test is likely covered by Medicare? I don't know about Medicare coverage for the genetic tests?
Of course , the only reason for the genomic test is that the results might change your decision on aggressiveness of treatment......is thata why you requested it?
The Docs at Kaiser are not allowed to do things that Kaiser insurance will not cover, whereas Docs at independent clinics only want assurance that their bill will be paid.....by insurer or by patient. Kaiser does not collect from patients....other than copays or deductibles.
Now, a really top notch Doc, at Kaiser or anywhere, would discuss alll the latest with you...wheter or not that Doc actually was able to offer you all the latest......IMHO. I certainly couldn't have done anything less had I been a Doc.
You are fortunate to be in close proximity to those institutions......many of us are not within a modest distanc e of such places .
very fortunate for you getting knocked out. That was not an option at Kaiser here. Just local and it sucked.
Did you ask? I asked, and I had a cooperative urologist. In any event, since I had a prostate mri that showed an area of concern, I thought, and my urologist agreed, that a targeted fusion biopsy would be most likely to give an accurate diagnosis. However, Kaiser doesn't/at least didn't have the fusion equipment & software, so , after going thru an appeal supported by my urologist, I had my targeted biopsy done at local med school clinic. But , that took 2 tries, as the med school "expert" refused to administer the propofol, "not needed", and the pain I endured just from insertion of the probe was too much to endure!!!!! So, then she relented, and I had to go back a 2nd time to have the biopsy done with propofol sedation. I HIGHLY recommend propofol.....also had it for my colonoscopy!!
Gleason score on a biopsy makes no difference after metastases are discovered. Was it required for the clinical trial?
i am not in a clinical trial it is just the order in which my treatment was given
It said that in your profile. There was no reason to have a biopsy then.
Thanks for this. I have never understood the relationship of PSA and Gleason score to the severity of the PSA. I had a PSA of 10, Gleason of 4+3 and then found I had 6 bone metastases across hips, ribs and skull, from a PSMA scan. Seems no correlation?
There is no (fixed) relationship between PSA and Gleason score. There are other variables at play such as the type of PCa, how much PSA it expresses and how long it's been growing without your knowledge or symptoms.
I believe I had PCa for at least two and a half years before I was diagnosed. My PSA was then 13, Gleason 4+4 and I had high volume distant metastasis. I've seen others with PSA in the hundreds or even thousands who had the same Gleason as me and less distant mets.
Agree. I had a PSA of 29 at diagnosis and had LN Mets and one bone met (Gleason 9). I have a friend (same age) who had a PSA of 81 at diagnosis (Gleason 9) but CT scan, bone scan and PSMA PET scan all showed no spread.
For cancer fully contained in the prostate, PSA is lowest for GS6 and is actually usually lower for GS10 than lower Gleason scores. Some metastases put out a lot of PSA, some little or none.
very true. My psa highest at 4.2 with Gleason 4+4 with the large tumor out of prostate against the rectum. Don’t rely on the psa. Get the finger.
So to repeat a question probably asked and answered. Is it correct the Gleason score is not relevant to how aggressive the cancer is once metastasized?
It's only an indicator of how aggressively the cancer should be treated if found confined to the prostate itself??
Metastatic cancer is aggressive, independent of the prostate Gleason. The only use of prostate Gleason scores is to provide metastatic potential (low-risk to high-risk).
Thank you
I'd like to ask one more question. A Gleason 7 and Gleason 9 guy have identical metastases. Will the Gleason 7 have better response/result with treatment or is it an even playing field at that point?
I don't know how to be more clear about this - The Gleason score does NOT matter once there are metastases.
Crystal. Thank you very much.
Is the pill Orgovyx an actual replacement for lupron instead as a supplement like Zytiga?
Yes
May I ask TA, what do you mean that the Gleason Score makes no difference after met is discovered ? I thought the aggressiveness of the cancer is different that the score 5+5 will progress much faster and more aggressive than the 4+3 even after the RP?
Please re-read my comments above until it sinks in.
What (I think) TA is trying to explain is that Gleason scores are used to see IF the cancer could metastasize. It’s basically assessing the chances of the cancer spreading to other areas apart from the prostate. If the cancer is already metastasized, then the Gleason score no longer matters. It’s kind of like when you really want a Klondike Bar, go to the ice cream truck, and they say they’re out of Klondike Bars. Your desire for it no longer matters, similarly the Gleason score here no longer matters.
Thank you PHn. I think I have " sunk" into the essenece of the meaning that Tall Allen posted. Can we simply say that the PCa cells after metastasy are equally aggressive regardless if they are 5+5 or 4+3 ? They are equally damaging and progressing to hurt us?
Another question that I hope someone will enlighten me -- will ADT eradicate PCa cells or ADT can only starve the cancerous cells to become weak and unaggressive till they find new nutrition ? Any case that ADT kill the cancer whout radiation? Thank you and sorry for my ignorance of this disease. I am in my 6th months after the RP and 4 months of ADT. For the time being my PSA is <0.006 ( serum test) or <0.058 by nuclear medicine lab. This is another puzzle I have, PSA can be checked either by serum blood test or by nuclear medicine lab. Which one should we look at as correct reflection of our real condition ?
not a medico but did anyone mention radiation to mets and gland?
For situations like yours, I would like to Know....were you having annual PSA tests, and the previous year was OK, and then the big jump when retested a year later?
Something to consider; my biopsy showed a single Gleason 7 (4+3) tumor and no involvement in the rest of the prostate. I elected to have surgery and the pathology showed that the tumor was actually Gleason 9 (5+4) and the rest of the gland was filled with Gleason 3 and 4 cells and the cancer had escaped the peri-prostate area. I don’t present this as medical advice, but something worth discussing with your medical team. Good luck with your journey.
Every prostate cancer case is unique.
A typical 12 core Bx for me would only have found one small 3+3. However a MRI had revealed a very suspicious area posterior midline so Dr did additional 7 core “end fire” samples under general anesthesia. All came back very high percentage 75 to 90% of each core.
GS 3+4.
From historical data I believe it had growing over a period of at least ten years.
PSA at the time was around 5. Slow gradual fluctuating rise over many years between 3-5 PSA.
%free PSA over 3 year period had varied between 16 and 25.
Sorry for your diagnosis. My approach has been all information has value. Realize early that this is a disease that has multiple clones from the get go. There will be a dominant clone that will largely drive treatment but the other ones are there. This disease like estrogen receptor positive breast cancer disseminates early (whether you can image it or not), these disseminated cells which are out to kill you will remain dormant for variable periods of time until reawakening occurs. If your lucky you outlive them reawakening but they are still there when whatever else gets you in the end. Push for aggressive treatment. Medical oncologists will want to cookbook you from the ASCO guidelines. Remember these are exactly that "guidelines" not hard and fast rules. If you stay on this forum even as just an occasional lurker you will see how variable the course of this disease is despite initial Gleason score, or metastatic pattern. Be your own advocate. Read and push your care team. Never just get a medical oncologists opinion, always also talk to a radiation oncologist. Surgeons become less and less important. I wish you well in your fight.
First understand the biopsies are small samples. That doesn't mean there wasn't something more aggressive that they didn't biopsy. Just means of the samples taken the numbers were 3+4=7 Gleason.
Use the computer calculator. (Sorry it ran out of paper).
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 07/20/2023 10:56 PM DST
PSA 70 & Gleason Score 9
Newly diagnosed Gleason 9
Newly Diagnosed Prostate Cancer. Gleason score 9, PSA 1.4 at age 58.
Gleason score without prostate biopsy
Dad's advanced Gleason 9 PCa
