Low psa , high cancer grade

@jeffmarc I think this was before surgery!

Hello - sorry to hear of your situation. I am going to be "direct" from my personal view point (this is a bit long):
"Tick, tick, tick, tick..." You're waiting for the bomb to eventually detonate. You have Grade 5 cancer, and it is still quite-fortunately "prostate confined." But it is only a matter of time before it moves to Extraprostatc Extension (EPE) presenting the surgical possibility of "surgical margins" when the surgeon removed "almost all", but not "all" of the prostate tissue. Urologist surgeons are, in one sense, operating blind: they go after the prostate to remove it and the seminal vesicles, but they have no idea if they "got it all" when the tumor broke through the membranous capsule of the prostate, spreading to who knows where? That is why the seminal vesicles are routinely removed...it is the first place the cancer will likely spread. But they don't really know if they "got it all" until a pathologist issues their report that may state - like mine did - that there are "surgical margins", meaning that the urologist left cancerous tissue in you. Fortunately, that only happens in about 10% of cases, but..."I" was one of the unlucky 10%. I now have a future of wringing my hands every six months "hoping" my Ultrasensitive PSA will be essentially zero. Then I wait another six months wondering if "this time" it will show an increase. That is my future for the rest of my life. The only good news that my urologist offered, is that those cancer cells need blood supply like any other living tissue, and the urologist removes the blood supply that those cells would need, likely killing them. But, some cells may migrate to find blood supply in order to survive. All it takes is just "one" cell to find blood supply, and your cancer will start to slowly grow over the years. That is why you will read stories of men whose cancer returned 5, 10, 15, 20 years later. About six weeks ago, a gentleman on this blog said his cancer returned after "25" years. Unreal.
You do not state your age, but I ask: "Why are you doing radiation and not the radical prostatectomy?" There are so many potential and probable negative outcomes to having radiation, unless it is Proton Beam Radiation which has far fewer side effects. Traditional radiation will fry your prostate and render it surgically unremovable. As my urologist counseled me during discussion of my options: "Radiation will turn your prostate into a walnut-sized piece of concrete that cannot be removed if/when the cancer returns."
At a grade 5 even with a lower/mid-range PSA, you are wearing a blindfold, juggling with your life. You have no idea when the cancer will spread to your seminal vesicles, lymph nodes, and bones "now" or if/when the traditional radiation therapy fails. I will let the guys who have actually had radiation chime in. It will be a mixed bag of men who have not yet experienced the side effects of urinary problems, and rectal/defecation problems, and others that have suffered for years with those side effects.
The challenge/problem with traditional radiation - (which is still the most chosen treatment, only because buying a Proton Beam Radiation machine is a large capital expense for hospitals, and traditional radiation came first) - is that traditional radiation travels not only "to" the targeted cancerous tissue area (the prostate bed), but it also travels "through" that target tissue and irradiates all of the healthy tissue around it. That is where the problems with your bladder neck, bladder itself, and rectum come into play. The very reason that Proton Beam Radiation was developed is because of the problems with traditional radiation frying everything around the targeted area, thus causing new problems. So...
My "personal" choice...the choice that I went with...is the radical prostatectomy. "If" or "when" my cancer returns someday, I will opt for Proton Beam Radiation therapy to give me my best/greatest chances of little or no side effects. I will also not do ADT. That is my "line in the sand." It is one thing to irradiate your body and suffer the eventual side effects, but ADT is quite literally "messing with your brain," which is the hormonal control center. You are taking pharmaceutical substances to alter your pituitary and hypothalamus function, to reduce/suppress production of the androgen hormone Testosterone. You should read the blog accounts of men who describe spontaneous weeping and other emotional lability, becoming more female than male in their behavior. Sounds like a total nightmare. Tolerating that from your wife or partner can be tough enough, without actually becoming a woman yourself. That is a strong statement, but it is factual...you will become more like a woman if/when you do ADT.
If you are 80 - 85 years old, then maybe radiation is a better alternative because by the time you experience the side effects you may only have a handful of years left to live, even if the side effects hit you earlier than later. The bottmline is that there is no permanent, lasting cure...you just pick what you feel will be your best options, and hope that you never have to read this blog again, because you will have been one of the "lucky ones" who did not have EPE, surgical margins, Cribriform gland tissue, seminal vesicle invasion, or lymph node and/or bone invasion. Guys are this blog tend to be the unlucky ones who had one or more issues. The lucky ones move on with their lives. Good luck to you...I hope that your choices work for you and that you never have to become a member of this club.

Just wanted to say that it does not have to be that way (as described above), so that new members know and do not get discouraged and panic in advance.

My husband had RP and is now going through RT and is on 2 ADT drugs and is 100% man in every possible sense or way - fully functional, exercises every day, no brain fog (works full time and has 2 side jobs), no emotional issues , not even hot flashes, no RT side effects so far 🧿. Even if he had all of them he would still be a man, feel manly and be a man in my eyes AS ARE ALL MEMBERS on this forum - men 💪.

I am still to see any member here that I would think is "not a man" enough - actually the ones with most SA are the "manliest" - living with so many challenges and pushing bravely forward requires extraordinary courage and fortitude !!! JMHO

It is very individual thing and nobody can predict how treatments will effect a person. There are people on proton therapy with very prominent SA. There is no PC treatment that is "perfect" and without possible complications but that does not mean that they always happen and IF they happen patients find different way to alleviate them and live normal lives .

What is the most important fact is that PC patients have so many treatments available unlike other types of cancers that can "take a person" from this world in couple of months : (((. I think that we have to keep that HUGE advantage in our mind - always. 👍

Are you having somatic testing of the tumor itself? You might consider https://zerocancer.org/stages-and-grading/biomarkers-genomic-testing
It is such luck to have caught this early with low PSA. Sometime these aggressive tumors lose hormone receptors. Testing the tumor can give information on the best treatment.
Best wishes

@jeffmarc no my pre surgery Psa was 4.13, I have my first follow up soon.

@gregmins This is wonderful that you got downgraded! I wish you a speedy recovery, hang in, it is worth it! And I keep my fingers crossed for your first post-OP PSA test! We had it after 7 weeks.

@gregmins Sounds like my story. PSA around 4, 4+4 at biopsy, downgraded to 3+4 at pathology.

Bingo, I have the same problem. 10 years ago in July 2016, low psa (2.0), but also biopsy showed low gleason scores. At prostrate removal in November, 2016, psa still low (2.3) but Gleason scores were the highest they could be. My mistake was not getting another biopsy a month or two after the first. We would have seen how aggressive the cancer was. Hindsight is 20/20. My genetic testing showed I have a mutated gene, the PLAB2 gene. This is the gene that controls tumor growth. I had no cancer history in my family going back 3 generations. I was exposed to Agent Orange in Vietnam which sowed the seeds of future prostate cancer. The mutated gene allowed the cancer to flourish.
A side note, everyone that I served with, that I could document, either has or has died of, prostate cancer. 58k died in combat and VA records reflect that over 350k, since the end of the war in 1975, have died as a result of Agent Orange exposure. Still no regrets.
Get another biopsy and definitely get genetic testing.
Good luck.

Short answer, yes...

PSA 2.1, biopsy showed GS 4+5...

Inquiring minds may want to know, with that PSA, what triggered action?

In 2010 I experienced DVT and PE. After getting through that (long story, I'll spare the details in the interest of brevity...) my PCM had just finished a CEMU on the link between DVT, PE and cancer.

So, first up, colonoscopy. That came back with polyps, pre-cancerous. So, instead of ten years, next colonoscopy in three...

Flash forward three years, doctor performing the colonoscopy takes the time to do a DRE while I'm out...when I wake up in recovery, he says, "Kevin, you should see your urologist...!"

Me, huh? But, I did. DRE reveals a lump, biopsy confirms...

So, a PSA which would not indicate trouble, no urinary issues or other symptoms...

Yet, 12+ years later...

I'll leave you with a word of caution on that "PSMA showed no...!"

High risk PCa is exactly that, data indicates you are at a higher risk of BCR (input your clinical data into the MSKCC nomograms).

My surgeon said based on the pathology report and his observations I should not experience any future "problems.. !"

Me, I'm thinking that Mx means they don't know and can't say. MSKCC said I had a 30% chance of BCR. Mayo had data that said in high risk cases more often than not the PCa had spread outside the prostate albeit micro-metastatic...

So, whatever you do, stay vigilant, discuss with your medical team the "monitoring" plan, types of labs, frequency, consults...

Kevin

My experience tells me loud and clear Do Not Fear the Treatment. It doesn’t have to be as described earlier in this thread.
Gleason 3+4. Radical Prostatectomy. Clear surgical margins, no lymph node invasion, no seminal invasion, very small ECE, decipher score .96. PSA undetectable for 12 months then started to rise. BCR confirmed 18 months later. 39 sessions of IMRT and 5 months of Orgovyx. The Orgovyx was tough decision as there was not consensus between RO, UO, and MO. After discussion with MO, a well known and respected genital cancer specialist at a center of excellence, we decided to go with it to give me best chance at a “cure”.
Bottom line, no SE. I am still a man. No weight gain, emotional moments, genital shrinkage, muscle loss, hot flash, etc. A great big nothing burger. I did and continue to lift weights 5 days a week, leg and core day then upper body day. I continued the sports I enjoy during treatment and after, and I feel great. All my pre-treatment worry was wasted energy. I thank God every day.
A handful of my friends who have been through this have had similar positive experiences.
Don’t let dire opinions scare you away from treatments that work. Just saying!!!