Newly diagnosed with prostate cancer: What might I be in for?

Hello, mspotter1956,
72 years old. Had my biopsy in June 2024: gleason 7 4+3 lesions in 3 out of 10 needle core samples. PSA 4.91. Stage T1C Nonpalpable. Other 7 samples clear. Radical Prostatectomy was not advised due to fairly recent hernia repair. Decided on IGRT with 4 months of ADT (Orgovyx). Halcyon equipment. I started Orgovyx 10/4/2024, 13 pills so far. Few side effects so far--maybe some fleeting muscle/joint pain, and periodic Restless Leg Syndrome. I will have SpaceOAR gel injected to create space between my prostate and rectum to lessen the chances my rectum being damaged by the radiation. After 2 months of ADT, will have 40 10-minute radiation sessions, concurrent with ADT. I don't want to frighten you, but there are no perfect treatments. I wish you the very best.

@mspotter1956

I have attached a pdf file which is a list of prostate cancer research items, with descriptions I collected over time. I think they might be helpful sources to you.

I had a Gleason 3+4 and a psa of 11.2 with the cancer confined to the prostate. I finished my radiation treatment in February 2023.

If you get radiation, please keep in mind that the margins used impact healthy tissue and therefore side effects. Margins refer to the additional area around the prostate that is treated. There are sometimes microcells that cannot be picked up with imaging so many times radiation treats the entire prostate plus a margin. I had the Mridian radiation machine with 2 mm margins, vs 3-5mm for most other machines. It has real-time built-in MRI which is a big deal in the industry. You might want to ask your doctor about margins and real-time MRI imaging radiation machines versus fused images.

The decipher test, as j76 mentioned, can change a treatment recommendation and is worth getting. They will use material from your biopsy.

Remember that doctors are dedicated but not infallible, even at centers of excellence, though I agree with posters recommendations in this regard. Keep coming back to this site as much as you can. Many times, you will get the nitty gritty here that doctors may or may not discuss with you. Sometimes it can seem overwhelming, but everybody here wants to help. One day at a time.

@mspotter1956
We all started where you are at now. A lot to think about and decide. Please understand that we are all different and everyone of our cancers is unique to us. So what is good, and what has worked for others, might not be the right choice for you.

When you meet with your urologist or R/O I suggest if they don't offer asked for the Decipher tests and PSMA test. Let them explain what they do and offer to the diagnosis. Those two tests will help defined the and confirm the aggresiveness (Decipher) of your cancer and if it has spread (PSMA) outside the prostrate.

To give you an example of Decipher test results. I was originally diagnozed with intermediate risk. I had the Decipher test and it came back low risk. This changed my consultation treatment that I have radiation and hormone treatments to just radiation. This recommendation was confirmed by Mayo Jacksonville R/O and UFHPTI R/O (again second opinions are important).

Do a lot of research. A poster mentioned a book. It is an excellent book. I am not sure you hvae time or want to do, but UFHPTI offers a free packet that includes the two books mentioned most on MCC along with tons of reserach, treatments offered, explaining photon radiation versus proton. It is a great source of informatino and you will get NO pressure to have it done there. It is free and you can get it just contacting them and they will send it to you via FED/EX.

Good luck. Just know there are a lot of treatment options out there. I see more and more new ones coming everytime I read MCC and do research. Just make the decision on what is best for you. I would also suggest getting a second opinion on diagnosis and treatments.

Thank you very much for the information. My goal is to remove the cancer and try to avoid major sexual and urinary function side effects, if possible.

Just some things to note. Often it is mentioned going to a center of excellence, and yes I did that too, and not saying it won't matter but it depends on who you get too. They all advise what they do, even in great places, so if you go to a great place surgeon he will advise surgery, if you talk to a radiation guy he will say radiation. They are probably better than other places, but still they advise what they do. Dr Woodrum at Mayo is interventional radiologist but he does some other options there. They didn't have many other options when I went, but several new ones are Tulsa Pro, see my story at:
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/
Another one is Vanquish in clinical trials one could see if they qualify. I also hear about some getting focal Brachy, no personal experience, but people report doing well.

With Tulsa they can do up to 100% of the prostate if needed, they can leave good areas if it is ok. Tulsa is also fine with BPH if you have any, BPH up to a certain size anyway. Most options are not ok with BPH but Tulsa is so that is a consideration. Older Tulsa they didn't take temperature up that long, now they leave it with temperature up to be sure all cancer cells killed. Anyway places now have improved Tulsa which is good, and I got that. HIFU is like Tulsa but done rectally, can't handle much and not good in many cases and can't be done with BPH. So HIFU is limited cases it can handle.

Vanquish Trials
https://clinicaltrials.gov/study/NCT05683691

Thank you for the suggestions and information. What are: MCC and UFHPTI?

I should also mention that pulse field ablation is starting to make its way into treating prostate cancer. It is pretty new in treating heart issues but is also being used, from what I have heard, in prostate cancer I.e. John Hopkins. PFA uses high-voltage but very short electrical pulses. These pulses create transient pores in the membranes of cells (electroporation), leading to a process called irreversible electroporation (IRE). In essence, the pores cause the targeted cells to die without significant thermal damage to the surrounding tissues.

Question: Can there be ‘surgical pathology’ with this TULSA? My feeling is that since tissue is ablated it cannot be used for post-op biopsy.
Sure, the tumor/cells are destroyed but what about marginal tissues? They can harbor cancer cells as well and sometimes of an even higher grade. How many of us have had our Gleasons upgraded from a surgical specimen? And I know radiation can also be accused of this shortcoming but usually the whole gland is treated regardless of the size and number of tumors. Just my two cents - always eager to learn! Thanks!