Prostate Cancer (47 yrs old) - Guidance Request

Posted by jtmarti1 @jtmarti1, Mar 30 9:09am

Hello - I'm new to this forum but recently diagnosed with 3+4 Gleason and wanted to get guidance on next steps. My Urologist is pushing treatment options (HIFU, TULSA), but I'm currently opting for Active Surveillance, but unsure if that is the right path.

My situation is I had a PSA of 2.7, MRI showed an 11mm lesion, Biopsy showed 3+4 (3+3 in other samples around cancer area), Polaris Score was 2.8 (slower moving, 1.8% risk of death in 10 years).

Given I'm only 47, I'm questioning my decision to go on AS vs. treatment. Planning to get a 2nd opinion from Mayo next month, but was hoping to get additional guidance from this forum. Thank you in advance for your input.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Getting a 2nd opinion at Mayo is wise. Understanding all of your options and all of the testing that should be done now is important. Assuming that all prostate cancer cells are within your prostate, you are curable now. If cancer cells spread outside of the prostate while on AS, treatments and cure rates change. Resources at PCF.org and PCRI guide your decision options for Gleason 7 (3+4), and include testing recommendations. For some people, in addition to the PCF.org and PCRI.org, Dr. Patrick Walsh’s book, “Guide to Surviving Prostate Cancer” is helpful to understand the recommended options for Gleason 7a and triggers points for action. Most importantly, understanding your own risk tolerance and what new information would result in you pursuing treatment is good to know now.

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Sorry you are here, but glad that you are taking action. Like the post above which is excellent, I would encourage to give yourself a few months to get educated, relax, meet a variety of doctors, relax, and converge on a mutual understanding of your situation with your health team.

Making a decision to go with active surveillance must be done as a form of embracing a series of treatment paths and not as a path of deferring your preparation. Any deferring of preparation won't bode in your favor, so while AS might be an option, don't let it be a way to ignore it.

I was 40 when diagnosed and had surgery at 41 and biochemical recurrence at 52 and now approaching 53 and aiming for the finish line of two years of ADT treatment. In my journey, I sought out a cure (surgery) and it worked out fine for 10 years, but now I'm in the next part of the journey. For me personally, AS wasn't an option, but it's a very personal decision, so definitely take the time to get educated, relax, and then organize your thoughts.

keep us posted and keep the faith!

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I agree with Jsh comments but I would add that this cancer is slow growing so it is not necessary that you address it tomorrow but you should be diligent in getting expert, quality, experienced medical advise and then proceeding. Sometimes the testing is not perfect. Before my surgery but after a biopsy I was diagnosed as Gleason 8, after my surgery and further examination of the prostrate it was diagnosed as Gleason 9. My care was and is excellent at UCLA

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At your age , I d consider RT. And keep a monthly eye on the PSA. And asking a medical/ radiation oncologist at Mayo is a good idea. Your PSA is in range, but could be on the upstring.

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At least at one time once you had any 4 in there at all, that was when they advised RP or radiation as only options. That you had somebody saying Tulsa is super great, just a few years ago they would never advise that. I had Tulsa:

https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/

But take your time till you feel comfortable with whatever decision you make. I can tell you that tissue that tests as 3 sometimes people say it may go away (only a few I have read that over last few years, so they say anyway) and others (many) it just sits there, but once it has 4 in there well... it is there and not going away. That doesn't mean it is growing, though it might be, but MRI over time would say if lesion has gown in size.

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You need expert and experienced diagnosis and treatment and monitoring. I would suggest getting an appointment with Dr. Eugene Kwon at Mayo Rochester. He and his team specialize in treating men with prostate cancer, and they are especially experienced if and when you develop advanced disease. They have kept my husband alive since he became Stage 4 with a recurrence in 2011. You are not yet even close to that stage, but it would benefit you to became a patient of the Kwon team now so that you can work with them as needed from here on out. Good luck to you.

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Just a few thoughts:

I would get a 2nd opinion on the pathology from Dr. Epstein at Johns Hopkins. He is the world's leading authority on pathology of prostate cancer. They do 2nd opinion reads frequently.

The needle biopsy samples only a very small portion of the prostate. There could be higher grade (I hope not) cancer that was not sampled.

I am sure your doctors will be following your PSA frequently. You may also consider yearly MRIs. No risk or downside with the exception of the cost.

At your age, I would opt for AS if your doctors believe this is an acceptable option. All treatment modalities have side effects and potential complications. With a Gleason 3+4=7 you will likely need definitive treatment at some time, but I would kick the can down the road as long as possible (provided your physicians believe this is a safe option).

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@retireddoc

Just a few thoughts:

I would get a 2nd opinion on the pathology from Dr. Epstein at Johns Hopkins. He is the world's leading authority on pathology of prostate cancer. They do 2nd opinion reads frequently.

The needle biopsy samples only a very small portion of the prostate. There could be higher grade (I hope not) cancer that was not sampled.

I am sure your doctors will be following your PSA frequently. You may also consider yearly MRIs. No risk or downside with the exception of the cost.

At your age, I would opt for AS if your doctors believe this is an acceptable option. All treatment modalities have side effects and potential complications. With a Gleason 3+4=7 you will likely need definitive treatment at some time, but I would kick the can down the road as long as possible (provided your physicians believe this is a safe option).

Jump to this post

Just a caveat to my post. Obviously, this is a very personal decision. It's the classic risk vs reward scenario. What do you value the most. Longevity survival or quality of life? Clearly, most want both but to some it isn't 50:50 but 90:10. No one can predict your future or if your disease will spread if you opt for AS. It is a difficult decision. Some of us (me) had limited options when diagnosed with a high grade tumor (got to kill it now).

Good luck to you!

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@retireddoc

Just a few thoughts:

I would get a 2nd opinion on the pathology from Dr. Epstein at Johns Hopkins. He is the world's leading authority on pathology of prostate cancer. They do 2nd opinion reads frequently.

The needle biopsy samples only a very small portion of the prostate. There could be higher grade (I hope not) cancer that was not sampled.

I am sure your doctors will be following your PSA frequently. You may also consider yearly MRIs. No risk or downside with the exception of the cost.

At your age, I would opt for AS if your doctors believe this is an acceptable option. All treatment modalities have side effects and potential complications. With a Gleason 3+4=7 you will likely need definitive treatment at some time, but I would kick the can down the road as long as possible (provided your physicians believe this is a safe option).

Jump to this post

Note Dr. Epstein is no longer at JHU. He has left at this point but is not somewhere new that I have heard as of March 2024, but I suspect he is not completely retiring but we will see.

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Thank you for the thoughtful posts. Really helpful as I continue forward.

My AS action plans over next 9 months are-> 1) continue with 3 month PSAs, 2) 2nd opinion from Scottsdale Mayo, 3) MRI in Nov, 4) another MRI guided biopsy in Dec w/ Polaris tissue genomics evaluation.

I know I'll eventually need treatment and the post bjroc helped as I consider TULSA (my summary was that while challenging at first, so far there are less long term side effects). My Dr is doing a TULSA clinical trial that would make my process be Free of charge (currently my insurance doesn't cover). Just feels the longer I can wait (while being very cautious during AS), the more advanced the treatment will become. And really like the idea of getting the pathology reports evaluated by an expert (Dr Epstein or equivalent if he's retired).

Appreciate all the help, really glad I found this forum. Goal from here on out is to end my time on this world due to something other than Prostate cancer!

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