Newly diagnosed and looking for treatment advice.

@buffalo1
Thanks, it is helpful.

@quaddick
You mentioned one and done. That would be surgery, but you mentioned SBRT which is radiation which would not be one and done. Did you doctors tell you about the distinct types of radiation treatments? How about low dose extended treatment which are around 30 treatments or high dose limited days usually around 5 treatments? Not trying to be specific on the days and numbers, just what I was offered and what I chose.

I did not have surgery but had 30 rounds of proton radiation. So don't have any experience with the surgery option. Those that had it would be better to respond to that option than I so can't pass on any experience with that option. I have read on MCC though very wide responses on the pros and cons of surgery.

You did not mention where you are being treated. Is it a experienced and trusted medical facility and specialists? If not, most of us would say a second opinion is always a good way to help with decision making. I did that and got a second opinion. I am not suggesting something I don't have experience with and did not do myself and why.

I did not have hormone treatment. It was first on my treatment plan, but I had a Decipher test that came back low risk not the intermediate risk my biopsies were read at.

I see you mentioned Gleason score. Have you been told by your medical providers about the Decipher test? How about PSMA? Those are tests that I had to fine tune my treatment plan. From that experience I would suggest you talk to your doctors about those tests as those test really changed my treatment plan.
Good luck!!

Thanks. I had those tests. I'm also going to get the prostox test. I have
an appointment for a second opinion. I'm leaning towards some form of
radiation.

@quaddick
Sounds like you already know the importance of second opinions when trying to decide that many of us, including me, did to help us decide what to do.

I am not familiar with the prostox test. Is this a new test? It is almost impossible to keep up with all the changes coming to prostate cancer treatments, testing, diagnosis that is changing so drastically and so quickly.

It's a test often mentioned by Dr. Scholz of the PCRI. It's a genetic test that can help predict if you may fall into a small percentage of men that will experience serious long term side effects from either SBRT or IMRT or both.

Hello "Quaddick" - first, I know you are receiving a figurative "hug" response from all of us out here. We all feel for you and what will now become a journey that lasts the rest of your life. This blog tends to be followed and commented on by us men who have more serious cases or unanticipated outcomes. The guys that enjoyed a smooth process without complications, seldom post. We here are the outliers, the exceptions, with most unusual circumstances...ones that place our projected longevity more at risk than those who had perfect radial prostatectomies or other means to treat their cancer.
What you will learn, as we all did, is that everyone's prostate cancer is different, beginning with the "30,000 foot" view offered by the Gleason Score. Others may chime in, but I came to know that the Gleason Score is very non-descriptive of what is actually going with your cancer. Some men with a Gleason 3+4=7 "Intermediate Risk" cancer can fall into a Grade 1, 2, or 3. It all hinges on the "pathology report" AFTER you have your prostate removed. And...one thing that jumped out at me was your higher Decipher Score. Genetics are involved here. The test looks for 22 prostate cancer-specific genes that give an overall likelihood of recurrence and your longevity, etc. You may have one or more genes that make your case less curable long term, and/or that it may come back sooner, etc. Your Grade doesn't seem to match what I would expect to see for a Decipher Test, so you've got a genetic component happening that I don't have and many others don't. As bad as my surgical pathology report was, my Decipher Score was "Intermediate Risk" at .50, which is still not good, but better than I thought based on my pT3b cancer category.
I had a slightly overly confident, yet assertive, urologist who at first spoke of "you'll be fine, we caught your cancer early", adding "but I am taking (surgically removing) your prostate anyway...there is no reason to do two years of active surveillance...YOU HAVE CANCER AND IT WILL NOT GO AWAY, and...why give it two years to get worse than it is now?" So, I put my faith and trust in my urologist, and I am glad I did.
What you may not have realized yet is that the post-surgical pathology report reveals all of the microscopic features of the tumor and cellularity that the biopsy and Decipher Test couldn't. There are the unlucky 10-20% ("me") that had "surgical margins", meaning that the urologist could not successfully remove "all" of your cancerous tissue, usually because (s)he wanted to preserve what is called your "neurovasscular bundle" that is the vascular and nerve center "energizing" your penis. There is "Extra Prostatic Extension" ("EPE") that confirms that the tumor has extended beyond the "capsule" that surrounds/contains the prostate (this is what lead to my surgical margins). There can be Cribriform glands. Upon microscopic examination the tissue appears like swiss cheese with "holes" in sheet-like patterns of the tissue. This is a more ominous feature (I have that). There can invasion of one or both seminal vesicles, also more ominous. I had slight invasion into my left seminal vesicle with Grade "3" cells and no presence of tumor or nodules, but which can exist in others. You can have bladder neck invasion which is also more ominous (I did not have that).
Without this getting longer than it already is, the above are all features that can only be seen upon serial-sectioning of the prostate tissue, post-radical prostatectomy. I had point-blank asked my physician during my biopsy report review: "Can someone have a cancer that is much worse than the Gleason Score might reflect, and which will kill him?" My urologist errantly said no. I too was a moderate risk Gleason 3+4=7, with only 6-10% of cells being "4", but with EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion, it threw me into the pT3b category. The invasion into the seminal vesicle changes the whole game. Even though both seminal vesicles and both vas deferens are removed with the prostate, a pT3b cancer "always" returns "within" five years...then you move to 40-days straight of radiation. Also...
Your first year post-op, you get a PSA level every three months. You of course want to be at the lowest reportable level there is < 0.1 ng/ml (essential "zero"). But, the moment your post-op PSA is 0.2 ng/ml or higher, you start talking about radiation with your urologist. There seems to be "schools of thought" about treatment as well. Some urologists will start radiation immediately after surgery if they know there are surgical margins and/or that you were a pT3b or other same/worse category. Others wait until/if your PSA starts increasing.
Bottom line: as much as I hated wearing a diaper for about 5-6 months (minimal leakage after month 4), and still being unable to get an erection (can take up to two years I am told), I am glad that I had my prostate removed. My somewhat innocuous, yet attention-notable Gleason 3+4=7 with only 6-10% of cells being "4", gave no clue as to the fact that my cancer was much more serious. You only really know how serious it is when it is removed and the pathology report details everything.
Everyone - including you - will make their best decision based on their needs and beliefs, but from my perspective, I am glad that I had my prostate removed. I would have never known it was actually a more aggressive cancer (per my urologist), than he or I thought, based initially on just the biopsy Gleason Score. Also, I have been corrected by others in this blog about the hazards of doing radiation first, then radical prostatectomy. They have claimed that technology has advanced, but...my urologist said "you never want to do radiation first, then prostatectomy 'after' that, if the cancer returns, because radiation turns your prostate into a walnut sized piece of concrete. It is very difficult to surgically remove a prostate that has been subjected to 40-days of radiation and the scarring that results." I trusted him and went for the DaVinci single-incision robotic-assisted radical prostatectomy...and I still had the suboptimal outcome and prognosis based on the pathology report. My suggestion is don't mess around or delay. "Time" will only allow the tumor to grow and perhaps extend out of the prostate into your seminal vesicles, lymph nodes, bladder neck, etc. Don't let that happen. Last advice, hop on Amazon and buy the "bible" of prostate cancer by Dr. Patrick Walsh, called "Guide to Surviving Prostate Cancer." It covers 99.9% of everything you want and need to know. It is currently in its fifth revised/updated version. It was $21.99. Good luck.

@quaddick

Just completed SBRT yesterday for Gleason 9, Grade 4 localized disease. I was on AS for 4 years with Gleason 3+4 and low Oncotype score when a follow up biopsy in July this year showed disease progression. I was told 12-18 mos ADT at initial RO consultation. Recent data (within the last 5 years) endorses disease free survival and mortality equivalent whether RT or RARP are the approach. I am counting on that!

(My Prostox test showed low risk for 5-high dose SBRT treatment protocol)

@jc76 Prostox is a new AI test that uses your genetics (swab in mouth test) to determine what your reaction would be to high does SBRT treatment and how it would affect your urinary toxicity. No idea how they can determine this using a swab from your mouth, but mine came back saying I am a bad candidate high does SBRT and that I would have a 95% chance of long term Grade 2 urinary issues. It recommended the longer low dose radiation treatments IMRT which said there was only a 5% chance. This test was ordered by my Mayo Jax Oncologist when he was considering SBRT and it change my path. I am now looking at surgery just to get this out of my body before it is too late.

@rlpostrp ,
Thanks for such a detailed response. It was very helpful. I will check out the book.
Good luck on your own journey.

@rbtsch1951
Thanks. SBRT is sounding the most "attractive" to me also. I'm still waiting to get my prostox ordered as both my RO and urologist are on vacation.