01/2025 PET SCAN- Results 13mm legion cancerous locally contained - no metastasis (best news ever)
01/2025 PSA 10.64
01/2025 (end of month) Consultation for treatment 1) HIFU - due to location of tumor cannot be performed (too deep - on far side of prostate opposite of colon wall) 2) Radical prostatectomy - chosen procedure 04/2025
Radiation beam and hormone treatment offered, but declined in the event radiation therapy necessay after prostate removal later.
Casodex will be taken between 02/2025 thru mid March 2025 (6 weeks) and stopped 4 weeks prior to RP. short term to help prevent any flares. Also, liver legion detected during PET scan but determined with MRI w/wo contrast - benign.
Most likely will have another PET scan in future with continued PSA testing. We will see how the robotic surgery turns out (most likely OK) but more worried about side affects of Casodex. (50mg)
"Radiation beam and hormone treatment offered, but declined in the event radiation therapy necessary after prostate removal later."
That is incorrect, but is what many urologists ( who don't know any better) say. In fact retreatment or focal ablation with certain kinds of radiation therapy or thermal ablation have better results than salvage radiation after prostatectomy:
I hear that, but I'd rather live witout cancer than with it and the cure rates of RP is 99% and better. Eliminates biopsies and chances of tissue burning from before and after radiation, ect. Again, to ones own. Thanks for your input.
I have to ask where you heard "cure rates of RP is 99% and better" - is this your urologist and is he offering to do the robotic surgery? Have you consulted with a radiation oncologist who specializes in PCa? And have you seen a medical oncologist who specializes in PCa (who doesn't have a horse in the race between radiation and RP, but does see the results of both..)?
I see your post about crappy insurance, that can be understood, but who told you "biopsies for life" - I've had exactly one - pre-treatment, and have no intention of ever having another one or needing another one. When I see "cure rate 99% and better" - NOTHING, no treatment I've heard of has that sort of "cure" rate. Sounds like a salesman talking not an MD.
Correct. No such thing as 100% anything in the medical industry for the most part, that is why they call it practice! Since I am localized and the tumor is opposite of the colon wall (deep) I opted for RP to eliminate future biopsies for the most part and to simply go on PSA test surveillance. If, and only if any cells have escaped (ones that even a PET scan did not detect-micro), then in the future I will most likely undergo MRI-guided radiation therapy system, MRIdian / MR-Linac. At my age, the less treatments for me the better. To ones own, the beauty of technology - robotic laparoscopy, external point beams, ect. As stated before, everybody is different. I am finding that people have a distate for choices.
I urge you to investigate for yourself the ‘99% cure rate’ for RP. It is thoroughly untrue. Recurrence after RP is 25-30%. 99% cure is an outlandish claim that no smart man should trust.
Recurrance is 25-35% for bothe types treatment radiation and removal. The idea is to reduce as much radiation treatments as possible to preserve tissue and not be on a drug trial system. Removal, then radiation, then the drugs. I'll be dead before the drugs - that's a long time. Drugs are a mask. For example, Casodex - blocker, Degarelix - cancer fuel decreaser (testosterone), even chemo is a mask and the side affects can be horrible. Remember, its about age, stage, and odds of outcome for longevity. To truly stop testosterone (fuel) get castrated. Nobody talks about that do they. Those that have no money travel to other countries for castration because they can't afford any other treatments for longevity of life. Patients choice.
‘Nobody talks about’ a lot of things. Urologic surgeons don’t talk about the likelihood of ED (far higher than radiation) and the shorter, thinner penis you’ll be left with. If those things don’t matter to you, by all means save the radiation for later. The myth that it can’t be the other way around is old medicine.
Not seeing an Oncologist (general physician). Seeing a urologist surgeon - specialists in a particular area that deals with prostate cancer and that is where people get confused - the circle of doctors. Good surgeons offer all of the options you desire based on age, cancer progression, life expectancy, whether you want to continue biopsies for life and on and on and on. To constantly hammer on people to only get radiation and take drugs is irresponsible. Everybody is different based cancer progression, financial status, etc., many people cannot afford PET scans for example or they are stuck on a crappy insurance programs limiting their options. I am glad you were able to keep all of your humanoid parts.
I totally comprehend. Please understand you are communicating with the toughest, most experienced guys on the planet. Guys whose resilience defies all logic of a common man. Guys who put themselves through treatments that only are understood by them and their unique situation. Most are seven figure patients. All for the purpose of extending the precious gift of life. So when you say urologist and SOC most will stand speechless. My best to you.
The adage “to a hammer everything looks like a nail” is most apropos where PC is concerned. Urologists are surgeons. Radiation oncologists use particle beams. Those of us who have been in this fight long term (10 years for me) have learned you need to talk to both extensively, and then consult with a medical oncologist before you have all of the information you need to avoid a life altering mistake.
On this board, advice from Tall Allen is highly respected. Dismiss it at your peril.
I also live in Denver area. Suggest you try to get a second opinion from Dr Bupathi with Rocky Mountain Cancer Centers. I believe it’s good to also have a MO on your team. Good luck!
Actually I have consulted with Dr. Bupahi (great)! That was for a benign liver legion seen on a PET scan. Urology Associates and their crew are taking care of me and are in consultation with Bupathi (saves me $50 copayments - yay)! All treatments have been offered with upsides, downsides, etc. In my case they concur I'll die of something else. In the meantime, I'll try my damnness to get to that something else. There is a plan. I'm just really lucky my tumor is contained and taking Casodex to minimize flares. The downside is that the second biopsy (poke and hope) missed the cancer so I trudged along watching PSA levels until another biopsy was ordered except this time it was URONAV fusion biopsy with MRI -3D magnification . If anybody is on surveillance you get that fusion biopsy. Unfortunately many clinics are not contracted with insurance for coverage so you have to pay out of pocket $600 - $900 and then file a separate claim for insurance. 2025 most if not all insurance cover it now. If I would have gotten the URONAV on the second biopsy I could have most likely been still diagnosed at 3+3=6 (low grade favorable) - with an extremely high 100% cancer cure. It is what it is! So, I elected to cut the head off the snake and go from there. Hellesfire, I'm 68. If get 15 years (less treatments I'm successful, if I get 20 - I WIN! Besides, I fly my own plane and scuba-dive . and run around in an RV coach with my wife of 42 years as well. I wish all well.
I live in Denver. Went with a “Top Doc” RRP urologist who claimed “cure.” Now, 14 years later I’m on two ADT meds for BCR, one lymph node. Fired the urologist a few years ago and went with a urologic oncologist which is what I should have done in the first place. As Dr. Myers said in his book, “There is no cure, only the hope for durable remission.”
I was initially a strong believer in RP but my urologist at a major cancer center refused to hear my treatment decision until after I had a consultation with a radiation oncologist. After balancing out the information I received and also from some of his comments I suspect he has very few patients return for a RP.
If "Using surgery first so that I have back up radiation in case of failure" was a wise choice there would be NO radiation patients (except for anatomic/health exceptions).
Think for a moment or two why there are so many successful radiation patients.
We know next to nothing about your physical condition and diagnosis. One thing I know is that a choice as important as this requires one and only one component: No regret. Your description of your decision appears to be choosing a treatment based on anticipation of regret
@cancergrinder No mention of you consulting a Radiation Oncologist abour SBRT , Brachytherapy . Nor have you researched several other Focal Therapy options . For example TULSA-PRO , NanoKnife ( Big worldwide , the US is lagging - Google NanoKnife in Toronto , Germany , Australia the UK Etc ) . Immunotherapy , Cryoablation etc.
I feel you are jumping the gun on your treatment selection -- An uninformed knee jerk reaction . Urologists always recommend surgery . It's in their job description -- they are Surgeons . ( Lets operate )
Have you studied Dr Patrick Walsh's book : " Guide to Surviving Prostate Cancer " -- Ofter referred to on this forum . A must study .
I know many associates who have had NanoKnife - Ages 60 , late 60's and early to mid 70',s .
All are pleased and : " No or Very Minimal " . short term side effects . In and out in a few hours . The worst complaaint , was the catheter for a few days .
Google " Dr . Emerton Kings College London - NanoKnife or Dr. Robert Nam NanoKnife North Toronto Cancer Associates .
If HIFU is 100% out of the question because of the location and grade of aggression, what makes you think NanoKnife will be the answer - IT IS NOT (all been considered). The odds are very to extremely high in my case to leave behind cancerous cells not to say even ONE CELL can be left behind with RP, but that cell would have to escaped the prostate pod and the PET Scan would not have detected it - possible. That is why I can return for MRI beam treatment in the future if need be. Then, they just grow and spread into the nerves, pelvis and the game is up with ongoing agony of treatments. I'm not so sure people actually read these blogs thoroughly. Again, everybody's situation is different.
@cancergrinder . NanoKnife gets at locations which HIFU cannot . Even RP leaves cancer behind - It's all about the boundries and the expertise of the surgeon controlling the Robotic Machine ( Da Vinci ) . As I said . The USA is lagging many parts of the world when it comes down to Prostate Cancer Treatment . They are even behind the curve, and slow , on moving to Transperinneal MRI Fusion Biopsies , where TRANSRECTAL BIOPSIES HAVE BEEN BANNED .
Note : TULSA-PRO was invented at Sunnybrook Hospital in Toronto .
Ten years ago I consulted with Dr Mark Emberton, multiple times; with doc friends at my side. Following last consultation he recommended I have surgery, as did Dr van As of the Royal Marsden, London (CyberKnife). I did have RP, back home in Austin, TX.
I read Wash - certainly grateful I do not follow his advice on definition of recurrence.
I read and consulted with Scholtz too (@fast_eddie). Scholtz was wrong on his recommendations for me.
As OP @cancergrinder wrote, "finding that people have a distaste for choices" - I'll add especially if it differs from the "toughest, most experienced guys on the planet" (@Almostnohope) and "Big Dogs" (@VictoryPC) on this board/forum. It is in this regard that use of "Unlocked" puzzles me. My diagnostic and treatment paths differ from many/all of the esteemed members, but then, I am just an "anecdote" according to one.
All the best to all of us fighting this beast! Murray
Well RP surgery is the most invasive option with the greatest risk of unfortunate side effects. Talking erectile dysfunction and incontinence. Incontinence is 24/7. Do you want to risk that?
I was DXd with metPC more than 12 years ago and a Gleason 9 and a PSA in the 40s.I had "experimental" prostate removal and I have also had 3 mets radiated during the course of my ADT treatments.
The only things I want to say are these.
Tall_Allen has provided incredibly informative information and advice to 100s if not 1000s of posts. I suggest you carefully examine his post.
In addition, IFFFF you decide to have the surgery, make sure you have a surgeon who has performed, at a minimum, 100s of THESE surgeries and preferably someone who has performed 1000s.
Lastly, itis my understanding that once you have been DXd, you should be consulting with a medical oncologist (MO), not a urologist.
It seems a tad odd that you are a newcomer to cancer and come on this site explaining your treatment decision and rejecting all advice from men who have been dealing with prostate cancer for years.
I’ll be the outlier here I guess. I went for the homerun too with RP. It didnt workout for me but the side effects of RP were nothing compared to the radiation that followed so I see why you are going the route you are. In my case it cooked my bladder resulting in urinary retention, catheters, a TURBT (to diagnose radiation cystitis), fulguration, months of bleeding, reduced bladder capacity, leakage and mild proctitis. I’ve been good for a couple of years but who knows what’s in store down the road. Radiation is the gift that keeps on giving. If I had it all to do over again, maybe I’d have gone with radiation right off because that’s where I ended up. Hindsight is always 20/20. I never give advice, just relate my experience. You have a plan that I don’t think is terrible. Good luck!
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