Q about options

Posted by jrobitai @jrobitai, Aug 18, 2023

sorry, yet another Q about options. I am 62 & have been on Active Surveillance since 2018. A recent (3rd) biopsy had one core that was 3=4 (4 of 12 cores 3+3) = intermediate risk.

It's strange to go from nothing to radical proctectomy (or radiation) and am not comfortable w/the consistency between the (3) biopsies nor with how little technology has progressed in the last 5 yrs re: proctectomy.

I've resigned myself to proctectomy but is there better, more sophisticated / less side-effect than robotic surgery? I'm kind of young and would like very much to maintain continence & erections.

HIFU, Laser etc isn't an option b/c the cancer is in many quadrants (varies w/ biopsy )

Thanks

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I had 3+4 as well. 69 at the time. Did my research and ended up with the MRIdian from Viewray, a linac photon machine. I finished my treatments in mid February.2 mm margins so there is less healthy tissue exposed to radiation vs the 4-5 mm margins used by other radiation machines. The MRI is built into the machine so it is real time treatment not just fused images. Auto shut off if your organs or body moves during treatment. Minimal urination side effects in the beginning which Flomax solved.

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Prostate Cancer Foundation
pcf.org
Patient Guide
Free as either a download or in hard copy.
I think that the progress has been an improvement in the performance of prostatectomy, the delivery of radiation and the addition/management of ADT therapy.
I had robotic prostatectomy with excellent surgical results, and would choose that again.
A center of excellence and/or a very experienced surgeon are important.
And we all wish that there were better options/treatments.
And we are all fighting cancer.
Best wishes.

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@bens1

I had 3+4 as well. 69 at the time. Did my research and ended up with the MRIdian from Viewray, a linac photon machine. I finished my treatments in mid February.2 mm margins so there is less healthy tissue exposed to radiation vs the 4-5 mm margins used by other radiation machines. The MRI is built into the machine so it is real time treatment not just fused images. Auto shut off if your organs or body moves during treatment. Minimal urination side effects in the beginning which Flomax solved.

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Thanks Bens1 - glad you had good results. Was your cancer localized? Not to get too personal, but how did 'the other purpose' work?

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@michaelcharles

Prostate Cancer Foundation
pcf.org
Patient Guide
Free as either a download or in hard copy.
I think that the progress has been an improvement in the performance of prostatectomy, the delivery of radiation and the addition/management of ADT therapy.
I had robotic prostatectomy with excellent surgical results, and would choose that again.
A center of excellence and/or a very experienced surgeon are important.
And we all wish that there were better options/treatments.
And we are all fighting cancer.
Best wishes.

Jump to this post

Thanks Micheal - glad you had great outcome! I do have one of the 'better' urologists in the area (upstate SC). A center of excellence is an excellent idea.

As far as robotics, perhaps the newer machines are better but not sure how old my urologist's are. There are studies using imaging during the process but this doesn't make sense to me - the robot surgeries I saw was pretty hi-res - maybe the imaging better shows the nerves?

But I digress...

Thanks

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Tulsa Pro can handle multiple lesions in differing areas. Just an option, doesn't mean ideal for you. It is cash pay till Medicare codes approved which is coming sometime not too far off.

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The questions around best option seem so daunting and how to make best decision is so personal. My husband, 68, chose RALP for Gleason 3+4 in one core. PSA never over 4.5 but PET looked like lymph nodes in pelvis were involved. But, as previously said, don't know until they get in there, take it, and send to pathology. Oncology recommended radiating prostate and the pelvis and take hormone 3+ years. So, he chose surgery at a center of excellence with world renowned surgeon. In addition to removing prostate he took 30 lymphnodes. No cancer cells in lymphnodes. So, totally agree that the scan can show "something" but unless it goes through pathology its just guessing. He had surgery June 23. He is fully continent but wears a light pad for protection. Says a cough or sneeze can cause a small leak, but not problematic. Erections good from the wife's POV, but a work in progress.
All said, he is really happy with his choice so far. First check coming mid September. Good luck and good health to you!

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@bjroc

Tulsa Pro can handle multiple lesions in differing areas. Just an option, doesn't mean ideal for you. It is cash pay till Medicare codes approved which is coming sometime not too far off.

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bjroc, I am curious how you are able to predict that the time is not far off for Medicare to approve Tulsa Pro codes. If true, and not far off is in months, I should hold off on other treatment options until then. So, your insight into Medicare's time frame would be helpful to me.
Thank you.

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I may have to go into Tulsa here in next couple months so Medicare changes will be after me, but this is the word out there. There is one video about Tulsa on youtube that goes over it a bit put out by the company Profound Medical, just repeating what they said. Usually the changes to Medicare are January, but if I understand there is at best a 50% chance of it being this coming January changes. So more likely January 2025 Medicare changes. So no chance for me to get it covered. Things like 'on the way" and "coming soon" have to be translated to government terms which is long.

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Great thread folks, thanks. I've seen several trials using Focal Laser Ablation (FLA) so maybe you don't have to wait for Medicare?

Search for NCT05027477

However, these seem to be localized (~3 cores) & not seeing any for proctectomy.

Waiting w/cancer is SUCH a risky proposition - the greatest country in the world & we have to choose between finances and SOTA treatment.

..but I digress.

On a side note - I am curious there doesn't seem to be any trials using AI to confirm pathology. I have read several reports where AI had a much higher success-rate at detecting cancer than humans.

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@jrobitai

Great thread folks, thanks. I've seen several trials using Focal Laser Ablation (FLA) so maybe you don't have to wait for Medicare?

Search for NCT05027477

However, these seem to be localized (~3 cores) & not seeing any for proctectomy.

Waiting w/cancer is SUCH a risky proposition - the greatest country in the world & we have to choose between finances and SOTA treatment.

..but I digress.

On a side note - I am curious there doesn't seem to be any trials using AI to confirm pathology. I have read several reports where AI had a much higher success-rate at detecting cancer than humans.

Jump to this post

So in a clinical trial, you may still have to pay outside hospital charges for standard stuff. Sometimes in a clinical trial that the government pays for completely, like at NIH where I used to work, they pay for everything. Or a company might pay (some perhaps) as they promote eventually use of their instrument in papers. But often times you pay a fee at Mayo (for example) or Yale or where-ever, and after procedure is done. I was in the Mayo clinical trial for FLA but this years biopsy made me in-eligible to be in the trial anymore since I have more than one lesion now, but at Mayo you still would need to pay for the FLA procedure itself.

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