Low psa , high cancer grade

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.

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

@kujhawk1978
I had a small lump on the prostate. Biopsy showed stage one. Urologist and surgeon said "wait and see" since psa was so low. My wife's family had a lot of cancer. We went through hell with her mom (died at 70 with a cancer that doctors never could figure out), and sister, died at 37 at Hopkins of breast cancer.
We decided to act fast on mine to avoid a long, lingering death like they had. It would have worked but I had an incredibly aggressive cancer. If we had moved faster, it would have likely been irradiated. We waited 4 months before removal. After surgery, radiation and 3 more rounds of treatment and surviving 10 years, my oncologist is amazed that I have lived this long. My psa went up slightly last month for the first time in 3 years. I find out this Thursday if it went back down or up.

@29modela
Have you had hereditary, genetic testing? Breast cancer and prostate cancer can be caused by a genetic problem called BRCA2 The occasionally BRCA1 has that problem as well.

If you do have that genetic problem, there is a drug specifically for it, So you want to get tested? It also is important because if you have children or nieces and nephews and that family Line, they could have it and should be able to know to be tested.

@jeffmarc
I had genetic testing. I don't have BRCA1 or 2. I do have a mutated PALB2 gene. Geneticist said the jury is out on whether or not it has an affect on prostate cancer. My daughter has the PALB2 mutation and is taking precautions.

I know many people that are grade group 5, like you. I know a lot of people that have been alive for well over 10 years with grade group 5.

The treatment ou have picked sounds about right. There are more than three different types of radiation. There is SBRT, IMRT And brachytherapy.

It would be useful to know how old you are.

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

@kujhawk1978
I had a small lump on the prostate. Biopsy showed stage one. Urologist and surgeon said "wait and see" since psa was so low. My wife's family had a lot of cancer. We went through hell with her mom (died at 70 with a cancer that doctors never could figure out), and sister, died at 37 at Hopkins of breast cancer.
We decided to act fast on mine to avoid a long, lingering death like they had. It would have worked but I had an incredibly aggressive cancer. If we had moved faster, it would have likely been irradiated. We waited 4 months before removal. After surgery, radiation and 3 more rounds of treatment and surviving 10 years, my oncologist is amazed that I have lived this long. My psa went up slightly last month for the first time in 3 years. I find out this Thursday if it went back down or up.

@jeffmarc
Hi Jeff, I always value your insight and I wanted to follow up with your regarding your reply to this thread. I'm hopeful you can share your thoughts as I was very encouraged to hear you say you know a lot of people with grade group 5 who have been alive for well over 10 years. Briefly, my numbers are: I was diagnosed at 56 years old. PSA 13.2 followed by prostate biopsy. Biopsy results: 8 cores = grade group 4; 4 cores = grade group 5. Cribriform morphology present. Perineural invasion; intraductal spread / intraductal carcinoma identified. I don't have a great idea about survivability, curative scope or duration of treatment other than I've completed radiation treatment and am on ADT + abiraterone (you've replied to some of the cardiac issues I have experienced from abiraterone) for two years. My oncologist says she believes it's curable. I struggle with the veracity of this statement and hope to get additional information from you. I value your input.

@29modela Same for me. I had gone down the Cyberknife road in 2013 with a PSA of 13 and Gleason 7's. In 2021., however, my PSA was only 1.5 and my Seattle Oncologist was "suspicious" and suggested a new biopsy. Local urologist almost laughed me out of his clinic with a 1.5, but agreed to do it. He stopped laughing when my new Gleasons came back as 8-9, sending me back for a second round of Cyberknife in 2021. So yes, you can absolutely have a low PSA with a higher grade of cancer. Don't let any of your doctors/urologists/friends tell you otherwise.