What would you do differently?

RARP in Oct 25 (Mayo Jax). Non-detectable PSA thus far. Grateful/Thankful. Have resumed all activities. Everything normal except minor dribbling and sex. Never dreamed I'd miss ejaculating so much. Oh well, new normal. Should consider overall excellent health a blessing and not dwell on my poor little pecker. Said the 65 y/o.

@folmajt
I am in the same boat, 66 y/o, Gleason 9, radical prostatectomy 3.5 years ago, PSA check every 3 month for 2 years, then every 6 month, always non detectable. I thought I was done with this cancer but then suddenly in December 2025 had a PSA of 0.16 initially, then 0.21 and 0.36. Now on Testosteron blocker until radiation later this year. I delayed the radiation due to prior (travel) commitments, was told that it would not make a difference as long as I am on T-Blocker . Cannot get used to my ever shrinking penis, no ejaculations, etc. However, I am alive, not on any meds, can still go out and run 4 miles at a decent pace and hope that I have plenty more years left to enjoy an overall good life.

When I had BCR in December 2015,18 months after after what my surgeon termed a highly successful surgery, T2CNoMx, Margins, SV, ECE clear, 10% involvement and GS 8, nerve sparing...the SOC was SRT to the prostate bed delivered in 39 IMRT with 70 Gya.

Mayo had data that was showing more often than not, in high risk patients, the BCR was already in the lymph nodes and a better treatment strategy was SRT to the prostate bed and to the whole pelvic lymph node system with short term systemic therapy.

I raised this with my urologist and radiologist. They "dismissed" it with the comment, "there is no long term data supporting that...!"

I acquiesced...sadly, I was right, SRT to the prostate bed was an epic failure, my PSA was more than double 90 days after SRT - .7.

Would the long term outcome had been different if I had stuck to my guns, we'll never know but intuitively, yes.

However, all was not lost, lesson learned, I am in charge, the 51% shareholder, my medical team owns 49%. I consult with them, value their training, education, experience and advice but the subsequent treatment decisions have been shared decision making.

I reflected and put pen to paper, writing rules for my medical team and I...

My rules:

Once I make an informed decision and carry it out, I never look back. Well, that is not entirely true, I look for lessons learned from that decision. The path is always forward: I continue to learn about PCa and always look ahead. What counts is today and what lies in the future.

Yesterday is gone, so forget it, well, learn from it.

I educate myself as completely as possible and take the time I need, I always know that no matter the outcome of a particular choice, I made the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself.

I am in charge. Not my doctor. They need to be consulted and their opinions and ideas should carry weight as I make my decisions. But I never forget: it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, with the focus on long life.

Don’t Walk In Cold to an Appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself.

Knowledge will empower my BS detector. When my urologists told me continuous ADT monotherapy is what I need and did not want to talk about imagining and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith.

I walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects.

I won’t blindly accept the opinion of a non-specialist – I know that my cancer requires a team approach.

Rules for my Medical Team

Know your stuff. As part of my medical team, you must have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack. If what I ask about based on my research is not familiar with you, then admit it, say you will look into it and discuss on my next consult. Better yet, you will call me

Do your homework. I expect you to have reviewed my medical records prior to my appointment, talked with other doctors I have seen that day.... You’ve looked at my imaging; you have my pathology report, labs. I can tell when you're looking at my clinical data from tests for the first time !

Respect my point of view. Listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I’m sure you can help me to feel confident about the plan you and I have shaped for me.

Don’t close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Rid yourself of the temptation to make your day easier by delivering perfunctory care.

When it’s decision time, please decide! Care for me with a dogged determination to get me healthy

Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.

Please talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions?

And yes, the front desk is key, sets the tone, pleasant, efficient on check in and scheduling on the way out...a kind word, smile...and don't call me "honey." You have my records, I am ok with you calling me by my first name or Mr.___

It's worked well for me!

Kevin

@kujhawk1978 excellent and helpful.
How do I nicely get my doctor past the explanations og GG, Psa density etc.? Stuff I know like the back of my hand

@kujhawk1978 excellent and helpful.
How do I nicely get my doctor past the explanations og GG, Psa density etc.? Stuff I know like the back of my hand

@service1010

I have fired several doctors who couldn't meet my rules, two urologists and an oncologist.

When Dr. Kwon insisted I do my radiation at Mayo vice back in Kansas City I looked him in the eye and told him I had a great radiologist who I trusted and I did not need to spend five weeks in Rochester.

One of the urologists was the Director of Urology at the NCCN Center here and also a major North American urology association.

It wasn't easy but I knew what I needed.

If you have one Gleason 10, you are a Gleason 10 the other numbers are irrelevant. That is very aggressive.

You really do need that PET scan to make any decisions about what To do. If you have metastasis outside the prostate, then the treatment is very different than if you have none. They would more likely lean toward radiation in that situation and if you had more than five metastasis, they would usually want you on triplet therapy with ADT an ARPI and chemo or Pluvicto.

You should make sure to get an hereditary, genetic test. I’m sure your doctors would agree that you need to have one since you are relatively young and have such a severe case. It can give you some ideas about what’s going on in the future, It may not change your treatment plan right away, but it can change it in the future.

I wish you would have included your PSA as part of this question because that is a real important piece of information.

As you may know, Neuroendocrine cancer can be very aggressive. I know a couple of guys that had it with prostate cancer and they aren’t around anymore because there just aren’t great treatments for it. Usually, you go on chemo with the addition of carboplatin. There are some clinical trials testing new DLL3 drugs and some look promising. It’s a big problem with breast cancer as well.

@jeffmarc I met with Dr Chen in oncology today. She mentioned the genetic testing and will get me set up with it. My PSA today was 10.8, in February it was 9.8, she was surprised it wasnt higher. She was also concerned about the possibility of neuroendocrine cells in the prostate and is going to have pathology take another look. If the cells are there then she feels a prostatectomy would be better than radiation due to the limited chance of removal at a later date. now I am second guessing the radiation route. I am going to start Orgovyx regardless of my treatment decision. Thought you might find this interesting.