Preparing myself for upcoming fork in the road

I had symptoms almost exactly like you. Had proton therapy spring 2024 than 2 years on lupron, depoprovera
Prednisone and chemo abiratersone. I wish I'd stopped the therapy after 1 year. Having a slow recovery

This Forum is Amazing and I've learned so much from everyone here! 🙂 Welcome to the club that no one wants to join ever. Sounds like you have a good frame of mind about your diagnosis and I hope that your PSMA and test(s) confirm there is no spread. You aren't alone in this! 🙂 this forum helped me through the process and I doubt I could have made it without the support of this group. Please update us on your PSMA and treatment plans. 🙂 Take it one day at a time one decision at a time.

The only Gleason score that counts is the 4+5. You are a Gleason nine and more likely to have reoccurrence as a result. Doctors Don’t really care about the lower scores.

Were any of the following found in the biopsy like intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions).

Any of these means that your cancer is more aggressive.

The results of the PSMA PET scan are very important. If no spread is found, and you don’t have any of those more aggressive things in your biopsy then you could choose between radiation and surgery.

I know many people with Gleason nine that have lived decades. It looks like you caught it early enough to have treatment work for a very long time.

It might make sense to get a decipher score. Even though Gleason nine means that you are more likely to have reoccurrence the decipher score can give you a much better idea about what’s going to happen.

One strange thing about prostate cancer is that it can go dormant for years. You probably seen me mention it but I know guys that have gone 20 and 30 years after treatment, with a Gleason nine, before reoccurrence.

I’m still alive 16 years after first diagnosis even though I’ve had four reoccurrences and have BRCA2, which prevents my DNA from correcting errors. With the drugs and treatments, we have today people live a lot longer than they used to.

@jeffmarc
Thank you! None of the findings seen in biopsy. Appreciate the information.

Like you, I'm a "hope for the best but prepare for the worst" kind of guy as well. I was instantly in action at the very hint of a problem when I had my PSA. After my biopsy and the doctor said he saw something concerning, I was already booking additional consultations, time with my personal trainer and lining up a pelvic floor therapist.

You can only control things that you can control. While you cannot control the cancer, you can control some aspects of recovery and life afterwards by starting now to take proactive steps. Fitness and pelvic floor health will aid you in your recovery and can help prevent ED and incontinence - or help recover faster if they do come into play (providing you kept your nerve bundles to prevent ED of course).

There is so much information on this forum that you can use as a baseline to go out and be proactive. I know this is crappy news, but you can have at least a small amount of control over parts of it and you should exercise that.

That's not the result you hoped to hear, and I'm so sorry.

If it's any scant comfort, even Gleason 9 is better than cancer that's left the prostate (the Gleason score mainly helps predict how likely it is to leave), and there are many of us here in the forum living fine, active lives with metastatic prostate cancer. So the "worst case" (the MRI finds something suspicious) might not be as bad as you fear right now.

Hopefully, they've caught yours before it's spread, which would be wonderful. Fingers crossed!

Welcome and so sorry you had to join our little club. FWIW, I was diagnosed Gleason 9 (5+4) with 10 of 12 cores at 100%. I'm on ADT and ARSI and just finished up radiation a couple weeks ago. Your PSMA PET is going to be the crucial factor as to where you go from here. If localized, you'll have more choices. If metastatic (my case), treatment choices diminish but treatment does not. I'm doing fine and every day I look at the green side of the grass is darn good day. Pretty amazing advancements in treatment even just over the last 10 years. You'll hear a lot about decipher and its ability to project cancer aggressiveness. I have no idea what my decipher score is (was). I and my care team were pretty sure it was aggressive when the "9" popped up and PET lit up like the proverbial Christmas tree. What did become important for future treatment was the genetic makeup of the tumor itself (somatic testing). I wish you well and a very boring PSMA scan. Please stop back in and let us know how its going.

Preparing and thank you

I am getting a PSMA PET scan next week. I was diagnosed this week with high grade PC after a few years of active surveillance. It’s been quite a kick in the teeth (something I unpleasantly experienced playing rugby) and have felt lost, frightened, and alone. Luckily have a great partner. Really struggling with the upcoming scan and wide variety of possible results and where that takes us, with the team here in Northern Colorado and an appointment at Mayo for potential treatment there.

Thanks to people who responded to my first post, and other posts I’ve read in this forum, I’m getting a lot smarter about what I’ve got and where things can go. Thank you for suggesting Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer. Excellent. Really helpful understanding my enemy PC, its allies in treatment side effects, and preparing me for the battle.

I am so grateful for this forum.

Joe

Praying for you!! There is a lot of support on this site to help you and you will be ok

Walsh’s book was my guide back in 2014-2015 when I did my first round with PCa and it is where I turned to first when I was diagnosed with a local recurrence this summer. Helped me to make best decisions and was also comforting as well, knowing that I wasn’t just lost in the wilderness.

A bit of a ray of hope for all of us is that therapies and technologies keep improving. Ten years ago, PSMA PET scans weren't around. Radiation therapy has gotten so good that it seems no to be an equal “gold standard” to RARP. ADT keeps evolving, and new therapies are in the pipeline. Living with PCa, even if some compromises must be made, is more and more becoming the norm.

So glad to hear you have a supportive partner. Makes a huge difference. Just this morning my wife said to me that I’ve been a calmer, kinder person since starting radiation therapy for my recurrence. Well, if this is a side effect, then I’ll take it and try to hold on to it.

Btw, I’m in the Denver metro and receiving treatment here.

All the best to you.

M