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

If you have one 4+3 you are 4+3 (7), the other Gleason numbers don’t matter. Depending on age you should be offered surgery or radiation (though there are some new treatments as well). You should immediately get a PSMA PET scan so you can see if the cancer has spread anywhere else in your body.

If the cancer has not spread outside the prostate, then radiation is usually the best answer, unless you have genetic issues or some other complication.

Another thing you should do is get a hereditary, genetic test. Do other people in your family have cancer, that can give an idea about how likely you are to have genetic issues. You can get a free, genetic test here.

Prostatecancerpromise.org

Just make sure you do not say you want your doctor involved or they will not send you the spit tube until they speak to your doctor. It may be possible to have this test done with the doctor you’re going to. You want to get genetic testing because it can have an impact on how you are treated. You will get the results in about three weeks and a genetic doctor will contact you with the results.

Who are you getting your treatment from? It makes a big difference if you’re going to a top-notch clinic or just a urologist. You get much better results going to place like the mayo clinic because multiple doctors will review what’s being recommended. There are many other places like Mayo, depending on where you live there may not be a Mayo available.

A Gleason 4+3 is somewhat aggressive, you want to do something about it soon so you have a chance of getting into remission. Waiting too long can allow the cancer to grow more., if you don’t want to make a decision right away, you should get on ADT which can stop the cancer from growing and spreading.

I'm sorry to have to welcome you to this unlucky club. My best piece of advice is go to a recognized "cancer center of excellence" if that's an option available to you. Google it and you'll easily find one. I did (Mayo Phoenix) and I was very happy I did. I felt the advice and care was outstanding. Also, I'd strongly recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer Paperback – October 3, 2023. It's on Amazon and it's the best $20 I ever spent. It really helped educate me on some key points in my decision making. It's organized in a way that makes it pretty easy to drill down on things applicable to your specific situation. One other thought I'd like to share is that for me (I'm 70 and was diagnosed on 3/30/2024) the more you educate yourself the better you'll be able to discuss treatment with prospective providers and the better you'll be able to make the decisions you'll have to make. It's like drinking from a firehose at first, but it's worth the effort to get knowledgeable as quickly as possible. I guess one thing that surprised me was I'd never really been seriously sick before, so I didn't appreciate that I'd have to ultimately select my course of treatment. Yeah, you'll get recommendations, but the final decision on how you proceed will ultimately come back to you. So it's pretty important to understand your options at each step as thoroughly as possible, especially since selecting an option might eliminate or impact other options going forward. Best wishes to you and yours.

Go to an NCI cancer center. Speak to a surgeon, a radiation oncologist and a medical oncologist. Learn the side effects of the various treatments and choose which ones you think you can live with. Doctors often downplay these (not all doctors, but many).

Discuss your decision with your spouse or partner if you have one since all PC treatments have some sexual side effects and they'll be affected too. Once you've made your decision, don't second guess yourself afterward. Read through the forums here. They are a wealth of information on various people's experiences.

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.

Thank you for sharing

@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.

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

mspotter,
I wholeheartedly second this>I'd strongly recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer Paperback< it lays out options and treatments. Also recommend "The Key to Prostrate Cancer" by Mark Scholz, MD. The books are written by experts in Prostrate cancer.
I just finished 5 radiation treatments at Mayo Rochester and I can not imagine a better ran facility. My side effects have been limited to less than a week of somewhat painful bowel movements (Ibuprofren and Tylenol) and that's it. Make your decision to the tyrp of treatment you want and don't look back. Good luck, ziggy

I had my RALP in August 2022. No side effects to date and still cancer free at this point (and hopefully will remain so). I can't add anything to the posts already in response to your question as they were all excellent. Your Urologist will recommend the PSMA scan to determine if any spread, but I'm sure he'll tell you that's unlikely so try not to stress about the test or waiting for the results. I too was a 4 + 3 Gleason. I considered radiation but I was 60 when diagnosed I was diagnosed and just liked the idea of getting the cancer source out of me. Also, if it comes back they can do radiation. It's a much more difficult operation to remove prostate after it's been radiated. I would speak to both a Surgeon and Radiologist after you get your biopsy results. In fact my Urologist who was also my surgeon wouldn't operate until I spoke to a Radiologist. Also, if you choose Robotic assisted laparoscopy make sure the surgeon has performed at least a 1000 of these. Experience matters.

@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.