Was on active surveillance, now gleason 3+4: Any advice?

@htc929 Yes sorry, two weeks and two days now after Hemi (Half) Tulsa Pro. I feel really good. No pain and starting to urinate better then I did before. Even had some morning wood which is a great sign. Won’t know if all the cancer is gone until I get my 3 month PSA and 6 month MRI, but if it’s gone it was well worth it. The worst part was the catheder. If you haven’t had one it’s not fun. They ablated the front half of my prostate where tumor was. I would highly recommend you talk to Mayo Jax about it and if they say your a good candidate do it. The two Drs at Mayo Jax who do it are Dr Ram Pathak and Dr Dora. Dora has done the most procedures, and who did mine. Pathak said he learned from Dora. Pathak is an oncologist and surgeon, so he will probably recommend removal initially, but press them if your interested in doing Tulsa. My out of pocket deductible max was paid up for the year, so I am waiting to see if it’s all covered by my Blue Cross Blue Shield insurance. There were 4 charges and they approved 3 and denied 1, but when I called they couldn’t tell me why it was denied, so they are reviewing it again. Tell me about your diagnosis and where the tumor is?

@htc929
I have been a patient at Mayo Jacksonville since 2006.

They have a great web site and you can do a lot of research on doctors and treatments on line. If you want to talk to someone directly call patient advocacy to guide you. Also Mayo Jacksonville just open their new 325 million cancer center and you can contact the new cancer center also.

I know I would have had my proton radiation at Mayo Jacksonville if they had offered proton but at that time only could offer photon. The new cancer center is suppose to be state of art and state of art cancer treatments.

@htc929
Went on Microsoft A.I. and found the following information on Tulsa Pro. Hope that helped.

I just was on Mayo Jacksonville Cancer Center web site and requested to join a new program there for cancer care.

Here is the A.I. information I found on Mayo Jacksonville and Tulsa Pro.
Yes — Mayo Clinic Jacksonville (Florida) does offer TULSA‑Pro treatment for prostate conditions, including prostate cancer.
Here’s the key confirmation:
✅ Mayo Clinic Florida is an official TULSA‑Pro provider
The TULSA Procedure’s own provider directory lists Mayo Clinic Florida as a treatment center, led by Dr. Dora and Dr. Pathak, offering customized MRI‑guided transurethral ultrasound ablation for both malignant and benign prostate tissue.
What this means for you
• Mayo Jacksonville has a dedicated TULSA program.
• They emphasize preserving urinary and sexual function, which aligns with the goals many men have when considering focal therapy.
• They use high‑quality MRI imaging, targeted biopsy, and individualized treatment planning.
• This is part of Mayo’s broader prostate cancer program, which includes proton therapy, HIFU, surgery, and advanced imaging.

@htc929

Here is what it says on the tulsa link about Mayo Jaxksonville:

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Mayo Clinic provides world-class comprehensive urologic care for patients with prostate cancer and Benign Prostatic Hyperplasia. As leaders of the TULSA program at Mayo Clinic – Jacksonville, Dr. Dora and Dr. Pathak offer patients customized treatment plans backed by extensive clinical research, high quality MRI imaging, and biopsy.

I would get a second opinion on the biopsy to verify the 3+4. If you find its not a 3+4 but a 3+3, then you stay the course you were on. If it is a 3+4 and 8 PSA, then you fall in the very difficult decision making range. By that I mean it's an easier decision when the cancer is significant what to do next. I was in a similar position to you. To this day, I am not convinced that I made the correct decision so I would not be a good person to recommend next move. My only advice would be to get all the information regarding side effects of surgery vs. radiation, apply it to your current life style, and don't rush into a decision. A PET scan would confirm no cancer has left the prostate.

I was Gleason 3+3, but a second biopsy 15 months later came back 3+4. This suggested a trend. Although testing showed no growth outside the prostate and did not suggest a particularly aggressive cancer, I decided there was no point waiting. So I have completed a course of radiation. The point here is not about the surgery v. radiation choice--there is rarely a right answer to that--but whether active surveillance continues to make sense. You're only 60, with a lot of life to live. I think you have to determine if the cancer is growing and, if it is, how much tolerance you have for worrying about it. I will still have to worry too, since neither surgery nor radiation is 100% effective, but certainly the risk is substantially reduced and life is returning to normal, more or less.

I have 3+4 I sent the biopsy to Epstein at john Hopkins they said it was 3+3 but the Nebraska Med still says it is 3 plus 4 my last biopsy 2 years ago was 3+3 in one core and 3+4 in another core less the 2# of the sample I am due another MRI in April and probably another biopsy after that I got a decipher test they said the 3 was a T1c low to but the 4 was to small to test my 1 doc wanted to operate but second opinion doc said active surveillance so that is whet I am at 74 years old and have been on active surveillance for about 4 years

Ask your doctor why the heck you were put on Active Surveillance in the first place. If I may assume that you were biopsied with a Gleason 3+3=6 previously, it is my opinion that you STILL should have had the radical prostatectomy "then." I'll repeat this the rest of my life - whatever that may be: The Gleason Score tells you NOTHING about the cellular-level pathology of your cancer. The Gleason score is the small tip of a massive iceberg that lurks under the surface. By waiting to the point that you are now a 3+4=7, you might have taken years off of your life...all to get the warn-fuzzy comfort of the first two years of doing nothing under Active Surveillance. Here is why I say the Gleason Score is nothing by the tip of the iceberg:
I too, upon diagnosis was barely a 3+4=7. I only had 6-10% of "4" rated cells in my biopsy. I was more 3+3=6, but those 6-10% of "4" cells made me the 3+4=7. My urologist is totally against Active Surveillance. He flat-out said: "YOU HAVE CANCER...there is no point doing Active Surveillance for two years, because all you are doing is giving the cancer time to grow. So...I'm taking your prostate (he insisted on surgery)." And HERE is the kicker: Your Gleason Score says NOTHING about the extent of, and cellular pathology of, your prostate cancer. My urologist was overly confident saying "don't worry, we've caught this really early, so you'll be around (alive) for the next 15 years or more (I am 70 years old). Then the post-surgical pathology report came out. I have Extraprostatic Extension (EPE) where the tumor broke through the membranous capsule of the prostate. NOT GOOD. I had "surgical margins" meaning that there was enough tissue outside the prostate capsule due to EPE, that my urologist couldn't remove it all. NOT GOOD. I had left seminal vesicle invasion. REALLY NOT GOOD. I had Cribriform glands (prostate tissue looks like Swiss cheese with holes in it on the microscope slide). REALLY NOT GOOD. ALL of this was not known from the biopsy and resulting Gleason Score. All of that microscopic, cellular pathology put me into the pT3b category. Even though both of my seminal vesicles were removed, along with my two vas deferens, and the prostate itself, I still have cancerous prostate tissue left in me...and it will grow. The nature of the seminal vesicle invasion, means that the cancer has a 25-50% chance of recurring "within" five years of the radical prostatectomy. My doctor was silent and shocked, saying: "it seems that your cancer was more advanced and aggressive than I thought." The overly confident attitude was now much more solemn. My first two PSA tests at 3- and 6-months post-op were fine at < 0.1ng/ml, but I have been referred to a Radiation Oncologist. I met with him, and he said that I wasn't ready "yet" for radiation, but will likely need it. He ordered an "ultra-sensitive PSA" that I will have done this week in timing with my 9-month post-op regular PSA. The radiation oncologist wants to see at least two data points for ultra-sensitive PSA before he decides "when"/"if" I get radiation. He has also been very candid about the great likelihood of lifelong urinary incontinence. I can't handle that...I literally can't handle that. I am just now, finally at 98-99% urinary continence at 9 months post-op. I still have accidents - quick leaks/dribbles - that see me wear a thin Depends Shield, but I hate it. I absolutely am enraged by urinary incontinence and a dead penis. I haven't had an erection in these 9-months post-op, when prior to that at early age 70, I had the virility and "performance" of a 35 year old. The message is quite clear: radiation oncology is NOT a perfected treatment modality. It is still so bad, that they tell you what the negative outcomes of doing it are. They can't seem to fine-focus the radiation beam to the bed of the prostate where the cancer still is, to treat just that area, without frying your urethra and bladder, and potentially your rectum. No thanks. And of course, this blog here is full of men who discuss that their cancer is back 1, or 3, or 5, or even 10 years after radiation therapy. So...radiation therapy doesn't work all of the time. It just delays the inevitable return of the cancer. They really just play the odds. They know it is a slow growing cancer, and that the various treatments (surgery, radiation, ADT/hormonal treatment, etc.) just slow the progression. They know it will come back, but they lie or fool us into thinking we are cured after each phase of treatment. So...long story short: Have the radical prostatectomy NOW, and just hope that your cancer is not as bad as it might potentially be like mine was with the seemingly innocuous "low-moderate risk" Gleason of 3+4=7. And... make sure that you physician orders the Decipher Test on your prostate biopsy or surgical tissue. It is a proprietary genetic test to screen for 22 prostate-specific cancer genes. It is scored 0.1 to 1.0. You want the lowest score possible. The results and what genes you have, offer a stratified, comparative risk assessment for your cancer, and your estimated longevity at 5, 10, and 15 years. The test is only performed by the lab who developed the test: Veracyte Labs in San Diego, CA. Insurance and Medicare cover the test...don't let anyone tell you that it isn't covered. Good luck. Keep us posted with a retrospective intro before your update each posting.

@rlpostrp As you have experienced, there are severe side effects from an RP and often a big chance of cancer left behind. A Decipher test could have been done on your biopsy sample to know more about the aggressiveness of your cancer before treatment was begun. A high quality 3T MRI could also have likely detected the EPE beforehand as well. MRI guided SBRT radiation is also much more precise, effective, and safe than what you give radiation credit for. I think the OP of this thread should get a Decipher test and a high quality 3T MRI scan of the pelvic region and then look into various radiation treatments. See my bio for more details.

@jc76 I should have gotten proton as the photon has left me with really bad side effects. I should have done more research as my RO did nothing in helping me understand what the side effects could be. Hope they get better but they really suck right now.