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.

jtmarti1: A lot of good advice from the others, including 2nd or third opinions. You might want to look at nccn.org. Their guidelines are used by doctors and patients alike.

I had a similar Gleason, Prolaris and Decipher test scores as you did but I was older, 69, when diagnosed in 2022. One radiation oncologist suggested AS even though I had a 10.2 psa. My brother had a 6.5 psa but the cancer had metastasized. The "slow growing cancer" reality is very different from one person to another and if you work through this web site, you will find stories of people who were delayed for various reasons, including those who were advised AS, where it spread even with frequent PSA checks and clearly yours was in the low range.

It is definitively a collaborative effort between you (and the research you do) and your doctors, who are dedicated but not infallible. They have their own natural biases which you may want to keep in mind (their personal success with one treatment vs another, internal institutional considerations, most recent technology advances they may not be aware of or have not used, insurance issues...).

Out of the radiation or removal choices, I chose a narrow margin, Radiation machine specifically with 2 mm margins to avoid over exposure to my healthy tissue, which affects side effects. It had a built-in MRI so that what you could see is what you could treat with automatic shutoff and dynamic planning. Most of the other radiation treatments use 3 to 5 mm margins. I had five hypo fractional treatments.

Like many, I was happy with my choice and would do it over again if I had a biological reoccurrence. I consulted with five radiation oncologists (3 from centers of excellence but all with backgrounds from centers of excellence), one urologist and spent a good deal of time on this web site and other center of excellence web sites, before I made my decision.

You are on this site so clearly you are researching. Every body reacts differently to cancer and treatments. Each treatment has its own side effects and quality of life and these are worth drilling down on as you gather information and then make your decision.

REPLY

Q: What led to your diagnosis and biopsy at your age and low PSA number?

My son is 43 and my stepson is 40, both with fathers who have PCa.

So I worry about them and early detection.

Dr Walsh's book is an excellent tutorial and the Prostate Cancer Foundation PCF.org has free patient guides (both hard copy and downloadable) that I found helpful.

Seek consultation with a Center of Excellence. I was treated at Johns Hopkins in Baltimore.

My thoughts and prayers are with you.

REPLY
@bjroc

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.

Jump to this post

I didn't know that. Thanks for the update.

REPLY
@michaelcharles

Q: What led to your diagnosis and biopsy at your age and low PSA number?

My son is 43 and my stepson is 40, both with fathers who have PCa.

So I worry about them and early detection.

Dr Walsh's book is an excellent tutorial and the Prostate Cancer Foundation PCF.org has free patient guides (both hard copy and downloadable) that I found helpful.

Seek consultation with a Center of Excellence. I was treated at Johns Hopkins in Baltimore.

My thoughts and prayers are with you.

Jump to this post

thanks for the info you provided. I've never heard of a Center of Excellence, so will learn more on that piece and where those are located for me to get consultation. Learn something new from this site every day!

What triggered the visit to the Urologist was the spike year over year, and i was having some discomfort in prostate area, but that was due to a bug I picked up while traveling in Mexico. I'd recommend to your sons on getting an MRI even with small increases in PSA (assuming the Urologist/Insurance approve). What I learned was that I have a really small prostate (15cc) and that 2.7 was high for that small. My dad had his removed at 59, so I knew it was a matter of time before I was going to be impacted.

REPLY

jtmarti1 - Sorry to hear you have been diagnosed with prostate cancer at such a young age. I was also relatively "young", being diagnosed and treated at 56 (Gleason Score 4/3). Being on the younger side of the curve, I opted for the most aggressive path forward (radical prostatectomy - Mayo Rochester) to give me the best possible chance of living prostate cancer free for 30+ years. I evaluated all the treatment options, but with my #1/#2/#3/... goals for treatment being 30+ years of cancer free life, I kept coming back to complete removal of the prostate, seminal vesicles, and surrounding lymph nodes (not all, but 9 taken for evaluation). I had a high desire for continence and a want for erectile function, but these were not an absolute necessity. In the end, I am 1.25 years post surgery, PSA is undetectable so far, and have full continence & erectile function. I attribute these good results to taking the time to choose the best possible center of excellence, picking the best surgeon at the center of excellence, doing all the optional/required pre/post surgery therapy, keeping a positive attitude about life, and of course praying.

I could not justify active surveillance because I just could not get past letting known cancer continue to grow within my body, knowing that it will at some point need to be addressed, and potentially metastasize outside the prostate. Cancer is tricky and no doctor can tell you with 100% confidence that the cancer will not spread. Also, imaging tools and physical biopsies have come a long way, but are not perfect - I was unwilling to bet my life on these imperfect tools & procedures.

Another reason I went with a RP was the ability to perform a post surgery pathology and define physically the margins. This gave me more confidence and peace of mind going forward.

I also evaluated radiation therapy, but did not want to rely on imaging tools to guide the treatment and I did not feel comfortable with the long term impacts from the radiation.

However, surgery does NOT guarantee the cancer will be gone forever. I have a 20% chance of bio-chemical reoccurrence and pray every day that the prostate cancer does not come back. Please note, nobody can tell you want the best treatment is for your unique situation. If someone tells you there is only one path forward, I would kindly ignore their advice ): . You must make that call yourself, then move forward with the consequences. I always recommend an honest evaluation of your life goals and then picking a treatment option that best aligns with those goals.

Best of luck with your decision and pray all goes well!!

Jim

REPLY

So sorry to hear you are in this game so early in life. I concur with this group about getting your education and different opinions. It can be quite stressful when you need to make a choice.

I wish you the best.

REPLY

Sorry to hear about your diagnosis also. I was diagnosed a few months before turning 60 in 2022. I opted for RALP from my Urologist who also is a surgeon who performed 1500 of these. If you decide somewhere down the line be sure to choose an experienced surgeon with RALP. My Gleason was 4 + 3. I had no incontinence issues almost immediately after surgery 8/22. I chose RALP as it allows for salvage radiation if the PCa returns (hopefully not). There are other options I heard other than radiation or surgery. Freezing I think is one of them but I never researched it though. I'm back to doing everything I did before surgery. It is depressing getting diagnosed with this, but then I think about young children getting diagnosed with cancer or people with disabilities who were dealt a tough hand from birth and I start feeling guilty for feeling sorry for myself. I had zero pain after surgery with no complications. We're fortunate to be living in a time where there are many options for treating this disease. Good luck. I'm sure you'll make the right decision for your particular case. I never had the chance for AS due to my Gleason score.

REPLY
@lag

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.

Jump to this post

I have just learned from another post that Dr. Kwon doesn't see patients until they have been treated and then had a recurrence, commonly and unfortunately referred to as a "failed prostate." I would still suggest seeing a Mayo urologist who deals with prostate cancer, which might give you the option for a transfer to Dr. Kwon's service if you later qualify -- which we hope you will not.

REPLY

My PSA was 6.1 when I was biopsied at Gleason 8. I opted for RARP after which the Gleason was downgraded to 7. PSA is only an indicator, not a tell all

REPLY
@hammer101

jtmarti1 - Sorry to hear you have been diagnosed with prostate cancer at such a young age. I was also relatively "young", being diagnosed and treated at 56 (Gleason Score 4/3). Being on the younger side of the curve, I opted for the most aggressive path forward (radical prostatectomy - Mayo Rochester) to give me the best possible chance of living prostate cancer free for 30+ years. I evaluated all the treatment options, but with my #1/#2/#3/... goals for treatment being 30+ years of cancer free life, I kept coming back to complete removal of the prostate, seminal vesicles, and surrounding lymph nodes (not all, but 9 taken for evaluation). I had a high desire for continence and a want for erectile function, but these were not an absolute necessity. In the end, I am 1.25 years post surgery, PSA is undetectable so far, and have full continence & erectile function. I attribute these good results to taking the time to choose the best possible center of excellence, picking the best surgeon at the center of excellence, doing all the optional/required pre/post surgery therapy, keeping a positive attitude about life, and of course praying.

I could not justify active surveillance because I just could not get past letting known cancer continue to grow within my body, knowing that it will at some point need to be addressed, and potentially metastasize outside the prostate. Cancer is tricky and no doctor can tell you with 100% confidence that the cancer will not spread. Also, imaging tools and physical biopsies have come a long way, but are not perfect - I was unwilling to bet my life on these imperfect tools & procedures.

Another reason I went with a RP was the ability to perform a post surgery pathology and define physically the margins. This gave me more confidence and peace of mind going forward.

I also evaluated radiation therapy, but did not want to rely on imaging tools to guide the treatment and I did not feel comfortable with the long term impacts from the radiation.

However, surgery does NOT guarantee the cancer will be gone forever. I have a 20% chance of bio-chemical reoccurrence and pray every day that the prostate cancer does not come back. Please note, nobody can tell you want the best treatment is for your unique situation. If someone tells you there is only one path forward, I would kindly ignore their advice ): . You must make that call yourself, then move forward with the consequences. I always recommend an honest evaluation of your life goals and then picking a treatment option that best aligns with those goals.

Best of luck with your decision and pray all goes well!!

Jim

Jump to this post

Hello, glad to hear things are going well for you. I too have Prostate Cancer 3+4 Gleason , two areas as well as 3+3 in three areas of prostate. I have been to mayo Rochester. Initial trip to see about radiation. Have a follow up with surgeon. trying to decide on treatment. Also have a quite large prostate gland at over 100 cc. Possibly leaning towards surgery. Would you mind disclosing who your surgeon at Mayo Rochester was? Trying to put together all the info I can beforehand. Thanks! Tim

REPLY
Please sign in or register to post a reply.