Beware the siren song of the greedy urologist.

I haven't been on Mayo Connect for some weeks. I'm so happy I came upon your message here, Jim! I know you had a great surgeon! And I hope that your PSA remains undetectable. But knowing you have your prostate cancer care at Mayo Clinic gives you the best chances possible, whether the future might hold. Yes! Each day is a blessing. Prostate cancer has been a big reminder to (my) Jim and me that this message is so true.

And rogerc525, I am so sorry for your initial care, or lack thereof. What a nightmare that doctor was! Unforgivable! Wishing you well as you move forward!
All the best to you @rogerc525 and @hammer101!
Rose

I contacted the hospital where the surgery was done; the doctor’s office stonewalled me. I only asked for it because my insurance company required it - not for lawsuit purposes.
Never asked you but did you ever ask the surgeon why you were so messed up? Any underlying issue discovered at surgery? Any previous issues? Have you seen a neurologist/orthopedist/chiropractor for this? We are positioned on a steep incline with our legs and feet elevated during surgery - maybe this caused a spinal issue?
The medical report could also show nothing out of the ordinary so talking to the surgeon is very important; you have to really let him know that he needs to refer you to someone who can pinpoint what’s going on…..or else you may have to “retain legal counsel to see what avenues are open” to you. Suing a doctor sucks - really does! But as I said, they have a legal team that can dig out all kinds of things that you cannot and have the resources to do so. They usually work contingency so they get a percentage of the award BUT be sure it’s all spelled out in the contract OK?
Hopefully it won’t go that far - you just want some relief! Good luck.

I found the opposite at Mayo in Rochester. They gave me my options, I made a decision and off we went. I only have biopsies when a lesion is present in the MRI to confirm it is cancer before removing it with HIFU.

Bomber, I assume you're getting periodic blood tests... especially PSA and testosterone. Hopefully that's reassuring.
Also, ask your oncologist if you're a good candidate for Lutecium-177.

What a powerful story. Thank you. Here's my short story on a long timeline. I came home from Vietnam with ED. 22 Year old with erectile disfunction. VA Told me it was nothing. Ten years pass. Primary care doc tells me something is wrong, we begin watchful waiting. Add 30 years of watchful waiting to the story. PSA test get invented. I embrace the innovation. Make them a part of my annual exam. My PSA results are always iffy, slightly high, but continue watchful waiting. Whoops one of my docs gets a headline for giving too many DRE's.

New Doc, more watchful waiting. PSA jumps to 20 at next exam. She refers me to local urologist. He does biopsy, it's bad, Stage 4, PSA jumps to 120 in the course of a month, he refers me to his prostate cancer network and they plan operation before my appointment. My primary care doc pauses, recommends a teaching hospital who have been wonderful, helpful. You know the rest, treat not cure, focus on quality of life which is a gift that keeps giving. I am in year four of this prostate cancer now.

Thanks so much for sharing your story. Too many guys panic and do not do the research.

I was diagnosed Gleason 6 in Sept 2022, PSA 10.5. Urologist told me the Gold Standard was Radical Prostectomy. He laso said he was legally required to tell me about other options, Brachy, SBRT, Active Surveillance. Most important thing he did was give a list of reading material which inclued Dr. Walsh's book, "Surviving Prostate Cancer". This was eye opening and comforting. I, like most, freaked out when he told I was positive for cancer. The book explained everything I needed to understand and how to make the best choice.

I met a radiologist locally. I liked him, but I also had all files sent to Mayo Rochester. I chose Proton Beam SBRT. Treated in December/January 2022/2023. Team was awesome and the results have been very good.

Everybody needs to do their own homework before going under the knife.

Thanks again!

Hi Bomer,

I'm sorry to hear about your condition, and that it has spread. Hormone therapy has been effective for me so far.
I got one shot of Lupron over 3 yrs. ago, and it's kept my PSA low. It was .01 for quite a while, and now the last couple of readings have been .02. I feel pretty good. Exercise a lot. (so important, if you can). Every body is different. So, yes, it's been effective for me. All the best, John

Thanks for comment. I will ask about lutecium.
Thanks again.
Bomber.

My PSA had climbed to 6.24 from 4.7, My PC referred me to a urologist, he ordered a pmMRI and a 4K score blood test, MRI was PIRADS 4 with a 12mm lesion and the 4K score max at 95. I then transferred to Mayo and they did an MRI Fusion perineal Biopsy, 23 cores, 6 with 70% Gleason 4+3=7 another 3 with 40% Gleason 3+4=7 and 14 cores benign. No other sign of cancer outside the capsule. I am 70 yrs old, my Dad had PCa at 63 but lived to be 90. After the biopsy I met with the Nurse practitioner, ( not the doctor) who gave me the results and said the urologist was recommending surgery, like I would just accept that and she said they would reach out to schedule. I said not so fast, I started doing tons of research, and I got them to do a PSMA PET which also confirmed the MRI results and I had them order a Decipher test, which I am waiting for the results of. Bottom line, I had to insist on the PSMA PET and Decipher, as I wanted all possible information before making a decision as to what treatment if any to have. I was leaning against surgery and after meeting with the surgeon, he said at my age I was not a good candidate, as it was MAJOR surgery, and recovery and complications could be difficult. I was relieved, as I did not want surgery, especially after asking him all the details. My prostate is 50.4 CC or grams, about the size of a lemon, and they just cut the whole thing out, not just the tiny area of the tumor which is only 12mm ( 1/2inch) and volume of .42 CC Since the Urethra goes right thru it they cut about 2 inches of it out with the prostate then pull down the bladder neck and pull up the urethra to re attach. Just a horrific thought, and shortens the penis by 1-1.5 inches. You have to wear a catheter for 2 weeks or more and you have a 10% chance of incontinence for life. NO THANK YOU Even after Radical Prostatectomy ( now I know why they call it radical) there is a 20-30% chance the cancer comes back. Then your other choice is radiation, poisoning your body and can also have side effects of incontinence and ED. Because the voulume of my tumor is so small ( not even 1/50th of my prostate) and my PSA only 6.24 I am meeting with my urologist to talk about Focal Treatments HIFU, Cryotherapy or even the TULSA PRO, it makes a lot more sense than surgery or radiation. Also I am in no rush, probably won't have any treatment until fall of this year, another 7-8 months. Even the experts admit that Gleason 4+3= 7 with a very small volume is not going to metastasize for another 5-7 years and then you have another 5-10 years before you might die from it. In other words, at my state right now, the 15 year survival rate might only be 10 % better with treatment than if I do active surveillance, or nothing. I have zero interest in living past 85 and would be happy to make 80 with no quality of life issues. Just my own personal opinion, each persons situation and life goals are different

That ‘s an excellent decision at your age. Don’t discount Cyberknife - yes it’s radiation but very low side effects and very high cure rate.
And yes, surgery IS MAJOR and not as ‘non-invasive’ as they make it sound. Best to you!