time to decide and I'm stuck....

Posted by wpg215 @wpg215, Oct 21 3:58pm

PSA: 9 ng/mL
Prostate size: about 30 cc (MRI 3.3 × 4.2 × 4.1 cm)
Gleason score:
One core: 3 + 4 = 7 (Grade Group 2, favorable intermediate risk)
Seven cores: 3 + 3 = 6 (Grade Group 1, low risk)
Positive cores: 8 of 12

I'm considered favorable-intermediate risk, I have the option of radiation (inter or external) and surgery. I think I've reached the point of information overload. The RO called and wanted to proceed after reviewing my PET and MRI. I told them I need some time. I like the idea of eliminating the cancer by getting the prostrate removed, I'm not looking forward to staying in the hospital, going under the knife, wearing a catheter for a week, and when the doc said he was gonna pull back (my little friend, lol!) that gave me some pasue as well.

I've reached an impasse. while I like the idea of getting rid of the prostrate to get rid of the cancer, with surgery, but the physical side effects don't appeal to me. Radiation is appealing but I do fear the long-term effects.

This is what understand

surgery: immediate side effects
radiation: gradual long-term effect develop over time.

Is it safe to say regardless of the treatment it come down to do I want to physical side effects up front or roll the dice that I may not develop long term effects due to radiation exposure.

how did you decide?

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

A pivotal factor for me was my MRI report's identification of a lesion as touching the edge of my prostate gland. I decided on SBRT radiation because I was concerned about possible microscopic extension of the PCa moving outside the prostate gland.

Stated differently, if microscopic PCa extension already occurred outside of my prostate, then surgery would not cure me. This made the SBRT radiation decision an easy one.

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Profile picture for heavyphil @heavyphil

@quaddick FWIW, my urologist also recommended NO ADT for salvage radiation; new studies showed that if recurrent PSA was < .7 you could avoid it. Mine was 0.18…
However, my RO at Sloan Kettering agreed with my gut feeling that I should have it - and I did with no regrets.
I realize your situation is different than mine since yours is primary treatment. But I just want to remind you that all these studies, scales of aggressiveness, and gradations of the Gleason Score (ie favorable low/unfavorable high, etc) are human interpretations of mathematical results; even AI at this point is based on human data.
My point is to err on the side of caution; ADT will absolutely make your PCa more responsive to radiation. While that is no guarantee of success, it does improve your chances.
I had 6 mos. ADT and while annoying, it was not a hardship. Many things in this life are much worse and last a lot longer! Best,
Phil

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@heavyphil Erring on the side of caution is worthwhile.

To paraphrase from Falstaff in Shakespeare’s King Henry 4th, Part 1 - “Discretion is the better part of valor.” (Caution is preferable to rash bravery.)

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Profile picture for kujhawk1978 @kujhawk1978

How did I decide....

Keep in mind, it was January 2014, choices were pretty much binary, surgery, brachytherapy. Imaging was not even that, CT and at less than 20 PSA, unlikely to "see" anything.

I chose surgery, offered the "best" chance of a cure and if it "failed," radiation was on the table. If I went the other way, it was not. In my surgery consultation, I told him that if he got in there and there was cancer in the nerve bundles, take them out, my goal was a long life. I understood the risk of incontinence and that even if the nerves were spared, erections would take time, be different, no ejaculation...

The good news, no ED, no incontinence. The not so good news, it didn't work, 18 months later, BCR....

Today, would I make that same decision? I don't know.

Why, so many options brough about through advances in treatment and imaging by medical research. I have friends who opted not to do surgery for all the reasons other members on this forum mention in their responses. They have chosen radiation, doublet therapy...Have their choices been successful, yes, in the short term, what about longer term, too early to say.

Have you looked at and discussed with your medical team, the NCCN and AUA guidelines, done your homework on treating Treatment for synchronous metastatic hormone-sensitive prostate cancer? Have you met with a medical oncologist with a background and experience in treating PCa?

You could punch in your data such as the MSKCC nomograms to calculate the probability of "success" in surgery?

Finally, keep in mind that even if the MRI and PET (you don't say which one, hopefully a PSMA, not the tired old conventional one) don't show spread outside the prostate, there may be micro=metastatic PCa too small to be seen by even the most sensitive imaging today.

Is there a rush to make this decision, who is rushing, you, your medical team, why?

Was it I, what would I do?

I would bring in the medical oncologist.
I would ask for the PSMA PET scan
I would read through the NCCN and AUA guidelines
I would read through patient resources on sites such as= the PCRI and PCF
I would review Dr. Kwon's series of lectures on YouTube.
I would discuss doublet and triplet therapy with my medical team

You're asking for what is the "right" answer, wish there was one. There are good decisions though!

Kevin

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@kujhawk1978 I am in the verge of going to Sarasota and having Dr Scionti do Tulsa Pro. His website reviews are fabulous. I am 69, Gleason 3+4, contained, PSMA clear. Does anyone know why Tulsa Pro is not recognized by NCCN? I went to their website, and no mention. Also Walsh’s book does not mention it. Mayo Jacksonville offers Tulsa along with every other option. I tried to make an appointment but first available is December 15. How do they decide which therapy is appropriate??

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Profile picture for brianjarvis @brianjarvis

@heavyphil Erring on the side of caution is worthwhile.

To paraphrase from Falstaff in Shakespeare’s King Henry 4th, Part 1 - “Discretion is the better part of valor.” (Caution is preferable to rash bravery.)

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@brianjarvis Falstaff was likely referring to Ozempic rather than to ADT.

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Profile picture for brianjarvis @brianjarvis

@jesse65 Before we started my planned treatments, a 2nd opinion increased my Gleason to 7(4+3). Not knowing which was right - the 3+4 or the 4+3 (since they were both educated, experienced opinions) - I chose to be treated using the higher Gleason score. So we simply added 6 months (two 3-month injections) of Eligard to the treatment regimen.

Having been told that resistance-training was key to minimizing the side-effects of ADT, with weightlifting and cardio, my experience with ADT was fairly easy.

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@brianjarvis My Gleason is 4+3, like yours. I just had an ArteraAI test, recently approved by NCCN, and it indicated that ADT would NOT improve my chances of a successful outcome in any significant way. In other words, it would be a waste of time, resources, and hot flashes to add ADT therapy. I would have forgone radiation just to avoid ADT, but now that is not a concern. Almost makes my decision harder...now I'm truly between RP and RT.

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Profile picture for ksellers3 @ksellers3

@kujhawk1978 I am in the verge of going to Sarasota and having Dr Scionti do Tulsa Pro. His website reviews are fabulous. I am 69, Gleason 3+4, contained, PSMA clear. Does anyone know why Tulsa Pro is not recognized by NCCN? I went to their website, and no mention. Also Walsh’s book does not mention it. Mayo Jacksonville offers Tulsa along with every other option. I tried to make an appointment but first available is December 15. How do they decide which therapy is appropriate??

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@ksellers3
They decide based on how aggressive your cancer is and how much it has spread. It seems that people with lower Gleason scores, and where the cancer is isolated to the prostate and not all over the prostate are more likely to be candidates for Tulsa pro.

It sounds like you would be a good candidate.

It is approved by the FDA. The NCCN requires longer-term data to include a treatment.

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Profile picture for jesse65 @jesse65

@brianjarvis My Gleason is 4+3, like yours. I just had an ArteraAI test, recently approved by NCCN, and it indicated that ADT would NOT improve my chances of a successful outcome in any significant way. In other words, it would be a waste of time, resources, and hot flashes to add ADT therapy. I would have forgone radiation just to avoid ADT, but now that is not a concern. Almost makes my decision harder...now I'm truly between RP and RT.

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@jesse65

Do you have any IDC or cribriform glands in you pathology report ?

If yes, according to some research papers and according to both RO and the urologist that my husband saw, RP might give you better chance for PC eradication.

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Profile picture for jeff Marchi @jeffmarc

@ksellers3
They decide based on how aggressive your cancer is and how much it has spread. It seems that people with lower Gleason scores, and where the cancer is isolated to the prostate and not all over the prostate are more likely to be candidates for Tulsa pro.

It sounds like you would be a good candidate.

It is approved by the FDA. The NCCN requires longer-term data to include a treatment.

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@jeffmarc

I agree. We had consult. for TULSA at Stanford and even though my husband was unfavorable 7 , he would have been a good candidate IF his lesion was closer to urethra. It was on periphery and in that case heat does not work well.
So yes, there are certain requirements for TULSA to work properly.

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Profile picture for jesse65 @jesse65

@brianjarvis My Gleason is 4+3, like yours. I just had an ArteraAI test, recently approved by NCCN, and it indicated that ADT would NOT improve my chances of a successful outcome in any significant way. In other words, it would be a waste of time, resources, and hot flashes to add ADT therapy. I would have forgone radiation just to avoid ADT, but now that is not a concern. Almost makes my decision harder...now I'm truly between RP and RT.

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@jesse65 So, with success rates comparing surgery with radiation being statistically equivalent no matter what treatment chosen (https://www.nejm.org/doi/full/10.1056/NEJMoa2214122), looks like your decision goes back to just side-effects and quality-of-life (or as that paper concludes, “… the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer.”).

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Profile picture for ksellers3 @ksellers3

@kujhawk1978 I am in the verge of going to Sarasota and having Dr Scionti do Tulsa Pro. His website reviews are fabulous. I am 69, Gleason 3+4, contained, PSMA clear. Does anyone know why Tulsa Pro is not recognized by NCCN? I went to their website, and no mention. Also Walsh’s book does not mention it. Mayo Jacksonville offers Tulsa along with every other option. I tried to make an appointment but first available is December 15. How do they decide which therapy is appropriate??

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@ksellers3

I do not have the experience to answer your questions about Tulsa Pro and NCCC, Walsh

As to "how go they decide which therapy is appropriate...?"

That answer is as I and others have said, starts with the science, the clinical data and the guidelines.

After that, a lot of variables in play, mostly data emerging from clinical trials that is working it's way into mainstream clinical practice but because of the NCCN process which is rigorous and requires a longer time, are not yet part of the guidelines.

How do they decide...the better question to ask may be how do you decide with the support of your medical team..?

The latter requires you to do the homework, know the terminology, definitions, and take advantage of patient centric resources that organizations such as PCRi, PCF and others work do tirelessly to make available.

The support of your medical team is their training, education and experience.

There is a shared decision making model that depending on you and your medical team's personalities may be best suited for decision making in a complex environment where there are many variables.

Of the four treatment decisions I've had to make, two have been based on the clinical data and the NCCN guidelines, they ultimately were "unsuccessful." The other two were based on the clinical data but we parted ways with the NCCN guidelines and leaned more to the data from clinical trials. Even then, we modified the final treatment decision.

Kevin

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