What would you do differently?

Differently? I was diagnosed in 2011 with low quantity G7 and on active surveillance 15 years. I had evolved to the place that I did a single year visit to an oncologist. Almost forgot that I even had PC, but I did. If I had payed a little better attention to my rising psa scores, I perhaps could have caught it at Intermediate Unfavorable G4+3 instead of High Risk G4+4. But it is also possible maybe even likely that I had G4+4 for a long time anyway. The new Fusion biopsy technology makes hitting dead center of cancer tumors much more accurate and therefore a better representation of the true nature of disease.

I am glad you got into Mayo soon, and within driving distance. They will take good care of you. Best wishes my friend!

1) Insist fircefully on PSA test back when I was 45 (three different doctors told me not to worry despite my family history if esrly PCa, one cracked up).
2) Do a saturated transperineal biopsy

From there, treatment may or msy not have been different.

@barnett1766
Somebody else mentioned that they had Neuroendocrine tumors in their liver and they were removed in surgery. Not sure if that’s always possible, But that gets rid of a pretty aggressive problem.

It’s really good to hear that you’ve had them there and it’s not causing serious issues since they are stable.

The one thing I worry about after 16 years of prostate cancer is it becoming neuroendocrine?.

I would have had PSA testing every year starting at age 50.

My husband would have had RP at G 3+3 , 7 years ago IF I knew all that I know now. I wish I did thorough research at that time and did not trust our urologist blindly. 😔

Yeah if I had known all that I know now I would have insisted my Husband have a thorough check up when he started having issues with passing urine freely about 8 years ago. I did bring it up periodically but he used to brush it aside insisting he was ok. Last year he had RARP for a G7 (3+4). Although grateful for his survival, I cant help beating myself for what could have been...

@oldgreenpaint Jeez, AS for 15 years and you still wind up with a Gleason 8…sometimes you just can’t win.
Phil

I was diagnosed at age 73 with Gleason 7 but tumors in prostate and two adjacent lymph nodes. I had 44 IMRT treatments and am in month 17 of 18 taking Orgovyx for androgen Deprivation. The treatment is controlling (eliminating?) the cancer well, but I have experienced all of Orgovyx's published side effects and am being treated for radiation proctitis which started during radiation 13 months ago. Do over? I would take fewer radiation treatments (26?) and six months of Orgovyx and take my chances while monitoring PSA carefully. My life goal doesn't extend much beyond 80 and quality of life is a more serious issue than I first imagined. I'm so close to the end at this point that I plan to see it through, but the level of recovery and "new normal" are unknowns.

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

Well said.

Totally agree, except I don’t mind being called “Honey”😂.