RP up next!: Time line: The short of it... - Advanced Prostate...

Advanced Prostate Cancer

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RP up next!

cancergrinder profile image
27 Replies

Time line: The short of it. (Denver area) - subject 68 year old male as of Oct /2024

Family physician alarmed over rising PSA levels 2022 - All PSA's listed as total.

08 thru 11/ 2022 PSA 4.4 (family physician). PSA has been monitored since 2013 (0.6 total) start.

01/2023 PC discovered biopsy (poke and hope) 3+3, gleason 7 PSA 4.4 / Stage 1 - low level

4/2023 PSA 5.5

06/2023 Switched urologists (robotic surgeon)

09/2023 PSA 5.9

11/2023 PSA 7.7

12/2024 Biopsy consultation

03/2024 Biopsy (poke and hope) - results 12 rods - BENIGN (missed it)

09/2024 PSA 10.9 Follow up 09/27 PSA 11.0

10/17/2024 PSA 14.2 (consensus - fluke) Follow up 11/2024 PSA 11.7

11/2024 - MRI W/WO contrast - prostate tumor confirmed

12/2024 URONAV Fusion biopsy - results 2 of 5 cores positive (14 rods) 4+3, Gleason 7 Stage T1C / Grade 3 Moderate.

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)

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cancergrinder
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27 Replies
Tall_Allen profile image
Tall_Allen

"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:

prostatecancer.news/2017/09...

For your unfavorable intermediate risk PCa, prostatectomy has the worst outcomes:

prostatecancer.news/2018/10...

cancergrinder profile image
cancergrinder

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.

Don_1213 profile image
Don_1213 in reply tocancergrinder

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.

Good luck. Let us know how it works out.

cancergrinder profile image
cancergrinder in reply toDon_1213

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.

Vangogh1961 profile image
Vangogh1961 in reply tocancergrinder

Way too many on this board have spread after RP. I had radiation to kill the source as stage IV on diagnosis. All surgeons will say surgery.

London441 profile image
London441 in reply tocancergrinder

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.

AlmostnoHope profile image
AlmostnoHope

You don't have any guarantees just proposed ones. You have low risk and should get another opinion from an Onc who doesn't push surgery.

cancergrinder profile image
cancergrinder in reply toAlmostnoHope

4+3, Gleason 7 is not low risk. It is aggressive and moderate aggression.

cancergrinder profile image
cancergrinder in reply toAlmostnoHope

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. :-)

AlmostnoHope profile image
AlmostnoHope

I know it well. Kept my parts. Dr Mark Scholtz

fast_eddie profile image
fast_eddie in reply toAlmostnoHope

Dr Mark Scholtz. Author of the book "Invasion of the Prostate Snatchers". Required reading for someone contemplating RP surgery.

AlmostnoHope profile image
AlmostnoHope in reply tofast_eddie

So true. He saved my life and the quality of this life.

AlmostnoHope profile image
AlmostnoHope

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.

Papa1 profile image
Papa1

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.

Luka77 profile image
Luka77

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!

Explorer08 profile image
Explorer08

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.”

cancergrinder profile image
cancergrinder in reply toExplorer08

14 years is damn good stretch. Good job. Nobody ever told me it was a cure and I surely never stated a cure either.

T911 profile image
T911

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.

tarhoosier profile image
tarhoosier

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 profile image
cancergrinder in reply totarhoosier

Your answer appears to be fetched from feelings.

Geno2853 profile image
Geno2853

I had RP. You should get additional opinions. From a radiation oncologist and a medical oncologist. What’s the downside of additional opinions?

cancergrinder profile image
cancergrinder in reply toGeno2853

Nothing, been there done that. Why would anybody think I haven't heard of any other opinions, facts, and data?

Conlig1940 profile image
Conlig1940

@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 .

Good luck .

cancergrinder profile image
cancergrinder in reply toConlig1940

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.

fast_eddie profile image
fast_eddie

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?

Skilover profile image
Skilover

Hi- FYI

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.

Good luck

cancergrinder profile image
cancergrinder in reply toSkilover

1000's! No kidding.

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