time to decide and I'm stuck....

@surftohealth88 Our situations are very similar. Hoping that PSA stays low, low, low! 🙏🤞

@brianjarvis Thank you for the detail and the best of health to you moving forward! I was recently diagnosed with 4+3=7. I fall into the unfavorable category and hormone therapy is being recommended if I do RT. Did your treatment include ADT? If so, how did that factor into your testosterone recovery and being back to living your life?

I'm in the same boat as you though I'm leaning towards radiation. Still waiting on my Prostox test and the results of a little experiment. The experiment is taking Aleve for 2 weeks and having a PSA test at the end to see if it goes under 10 from my last result of 12.8. The Aleve experiment is to see how much of my PSA is from inflammation vs cancer. If it drops below 10 I'll be low intermediate vs high intermediate and I'll be able to skip ADT. The Prostox test will tell me if I can expect serious side effects from RT; if so, then maybe I'll consider surgery.
The options are overwhelming. I know how you feel.
Good luck to you!

@quaddick

PSA levels are not perfect indicators of cancer aggressiveness 😳- who suggested Alive if you do not mind me asking ?
PS: Just went to see your initial post - your Decipher is 0.81 - you have VERY aggressive cancer and your PSA level should not be used as a measure of aggressiveness according to all that I read so far and according to multiple specialists I talked to.

@jesse65 Before we started my planned treatments, a 2nd opinion increased my Gleason to 7(4+3). Not knowing which was right - the 3+4 or the 4+3 (since they were both educated, experienced opinions) - I chose to be treated using the higher Gleason score. So we simply added 6 months (two 3-month injections) of Eligard to the treatment regimen.

Having been told that resistance-training was key to minimizing the side-effects of ADT, with weightlifting and cardio, my experience with ADT was fairly easy.

I saw both the surgeon and RO. The surgeon convinced me not to have surgery as the chance of no sex and wearing a diaper are both major NO's for me. The RO didn't spend any time warning me about side effects and I just got a 3 page hand out that said these things "may" happen. So I had 28 sessions of IMRT. I am 8 months from my last treatment. Side effects suck. Bad News - Frequent urination/stinging and 3+ bowel movements a day. Good news - No diaper & sex is fine. If I had it to do over I would go for proton radiation instead of photon. The IMRT was supposed to really target just the prostate but obviously hit other things. I should have done my homework before I trusted the RO. I have read from people that did proton they don't have any serious life style changes like I did. Good Luck to you in your treatment.

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Many of them are more dangerous than the cancer.
This is because docs now have many contradicting forces applied to them. Don’t assume curing you is at the top of anyones list.

@groundhogy

Yes, but you see, pre-op. biopsy is correct in only about 43 % !
https://pmc.ncbi.nlm.nih.gov/articles/PMC3668408/
We were under impression that my husband's gleason was 7 when in fact post op gleason was 9.

How did I decide....

Keep in mind, it was January 2014, choices were pretty much binary, surgery, brachytherapy. Imaging was not even that, CT and at less than 20 PSA, unlikely to "see" anything.

I chose surgery, offered the "best" chance of a cure and if it "failed," radiation was on the table. If I went the other way, it was not. In my surgery consultation, I told him that if he got in there and there was cancer in the nerve bundles, take them out, my goal was a long life. I understood the risk of incontinence and that even if the nerves were spared, erections would take time, be different, no ejaculation...

The good news, no ED, no incontinence. The not so good news, it didn't work, 18 months later, BCR....

Today, would I make that same decision? I don't know.

Why, so many options brough about through advances in treatment and imaging by medical research. I have friends who opted not to do surgery for all the reasons other members on this forum mention in their responses. They have chosen radiation, doublet therapy...Have their choices been successful, yes, in the short term, what about longer term, too early to say.

Have you looked at and discussed with your medical team, the NCCN and AUA guidelines, done your homework on treating Treatment for synchronous metastatic hormone-sensitive prostate cancer? Have you met with a medical oncologist with a background and experience in treating PCa?

You could punch in your data such as the MSKCC nomograms to calculate the probability of "success" in surgery?

Finally, keep in mind that even if the MRI and PET (you don't say which one, hopefully a PSMA, not the tired old conventional one) don't show spread outside the prostate, there may be micro=metastatic PCa too small to be seen by even the most sensitive imaging today.

Is there a rush to make this decision, who is rushing, you, your medical team, why?

Was it I, what would I do?

I would bring in the medical oncologist.
I would ask for the PSMA PET scan
I would read through the NCCN and AUA guidelines
I would read through patient resources on sites such as= the PCRI and PCF
I would review Dr. Kwon's series of lectures on YouTube.
I would discuss doublet and triplet therapy with my medical team

You're asking for what is the "right" answer, wish there was one. There are good decisions though!

Kevin

@surftohealth88 I have seen it go both ways. An acquaintance of mine had pre-op Gleason 4+5, downgraded to 3+4 after RARP. All his care at a center of excellence with broad experience in PC management. His surgery was complicated by incontinence (requiring an artificial sphincter) and ED (requiring a penal prosthesis) though he remains disease free with undetectable PSA now 2.5 years out from surgery. To some degree we must accept that the small amount of tissue actually sampled at biopsy will not always be 100% accurate when the entire gland can be examined. Still, the science tells us that decisions can only be made based upon the best information available, albeit imperfect. We cannot/should not examine our care under the retrospectoscope, as hindsight vision is always 20/20.