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Decipher risk: prostatectomy RP vs radiation.
Hi everyone,
I was considering radiation therapy vs. surgery, so my radiation oncologist ordered a Decipher test. My Decipher test results came back at .61, which crosses the threshold from intermediate risk to high risk, meaning radiation would include six months of hormone therapy.
Since I was deciding between RP radical prostatectomy vs. radiation, it seems to me that I definitely need to get the cancer out via surgery vs. doing radiation first. I can't imagine starting with radiation as first course for treatment for me at age 63 in otherwise good health, with 3+4=7 contained Pc.
It sounds like it is rare for most to have Decipher test information prior to a RP since it is a tool for accessing radiation options. . But, my guess is that means the surgeons will be more aggressive in surgery with that knowledge of high risk cells.
Big question: Do you know what I can expect from surgery if they are more vigilant with removal since they would know in advance that the cells are more aggressive?
Guessing nerve sparing is less likely. Not sure if that extends to the bladder neck and stuff like that?
Side note: A big factor I look at in my decision making for surgery vs. radiation is if there is recurrence, what are the salvage treatment options. If I have surgery, than I retain the option for salvage radiation (which looks like it would include hormone therapy). If I do radiation first and there is recurrence, than it's lifelong hormone therapy, which sounds like it doesn't blast the cancer, it just delays it. So, that tells me that surgery is my best first option.
Thanks for your help!
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@brianjarvis I am with Brian on this situation. Many people believe that having an RP means that you are, “Getting the cancer out”. But very often some microscopic cancer escape has already occurred before the RP is even performed. Enter your data in the MSK nomogram here https://www.mskcc.org/nomograms/prostate/pre_op if you would like to see your odds of recurrence after an RP. Recurrence after an RP happens at least 30% of the time and up to 40, 50, and 60% depending on other risk factors. An RP is far from a guarantee that you are getting the cancer out. See more info here https://www.inspire.com/m/williamwattsmith/about/
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2 ReactionsMy husband had the highest Decipher score possible (1). It did not effect surgeon's plan at all. He had nerve-sparing surgery ( 6 mos ago) and he is very happy with his decision.
His incontinence fully resolved at 4.5 mos, and for ED there are so many treatments and options that it is not an issue for us.
We were immediately preferring surgery as an option and both RT and surgeon told us that in his particular case (with such a high decipher) surgery was the best step forward as a first line of defense . As a high risk patient he has high risk of BCR and he needed that second line of deference as an option.
Regarding surgical decisions made by a surgeon - sometimes surgeon discovers things inside that are not visible on any scan and has to make decisions on the spot. So, yes, if he discovers that cancer actually did invade bladder neck he will have to cut little bit more but even than, good surgeon will know how to compensate for that and make the "left over" narrower to prevent incontinence etc.
The most important thing is to find the best possible surgeon (one who did thousands of those procedures) and you will have great chance to heal with zero side effects.
Wishing you all the best and a complete eradication of PC < 3
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5 ReactionsI didn’t answer one of your questions.
During surgery, they will usually send tissue out to The pathologist who will examine the tissue and see if it has cancer in it. They will then let the surgeon know whether or not it is clear and if not, the surgeon will cut some more into the tissue to try to get clean margins.
The question is, does your surgeon have this capability?. I know a pathologist who used to work in a hospital, and that was part of his job, to examine tissue as The operation was going on.
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2 Reactions@charlesprestridge
Thanks Charles-wishing you safe passage on this crazy journey. Somehow, I got approved for a PET scan early (though insurance is not paying the testing lab-so hoping that crazy bill doesn't end up in my lap).
Yes, I guess it's like collecting clues and making the best guess based on what knowledge you can build it. Thanks for the good advice.
@tuckerp
So glad yours was contained post op. That's a big deal. ED/continence roll of the dice is challenging for sure. Guess we really aren't in control, which is the biggest hit to the idea of manhood. Good luck with your next steps.
@brianjarvis
Very interesting on the genetic testing. Thanks for all of that amazing detail and the links.
Questions:
•Is there is value in more testing if I already know Decipher shows high risk cancer cells?
• For those additional tests, how do you go about requesting them?
The reason I'm thinking surgery is that both my radiologist and surgeon did not recommend cryo as being very effective. The radiologist said that doing a second radiation after radiation means definite radiation damage to the surrounding bladder/bowel areas. He also told me that follow-up hormone therapy doesn't kill the cancer, it just slows it down.
Thanks so much for your wise words!
@jeffmarc
First, thanks so much for that assurance on those test results. I know tests are not absolute proof of my situation, but it's all I got right now. Feel better that I don't have those issues on my plate right now.
Second; Mind blown at your journey with all of the drug treatments. This is NEWS to me. I did not realize that recurrence options went beyond surgery>radiation>gene drug therapy.
So glad that all of these methods have worked for you. I can only imagine the angst as each phase offers hope and then diminishes. You are a warrior in my mind.
Is there value in getting genetic testing before surgery? I'm guessing that genetic drug treatment is a recurrence treatment and not a starting point.
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1 Reaction@wwsmith Sobering, but important information.
I punched in my numbers into that site and it looked better than I expected. It showed survival rate at 15 years at 98 percent. Progression free probability at five years being 77 percent. Progression free probability at 10 years being 64 percent.
So, reading into that, the stats say I'll likely live 15 years(!), but have a 23 percent chance of recurrence in the next five years and at 10 years a 36 percent chance of recurrence.
So, it's very possible that I will have recurrence.
Is there a tool like this for estimating recurrence risk for IMRT?
I wasn't able to follow the inspire link without signing up. Is that a good site for more information? Thanks so much!
@surftohealth88
Oh my goodness, thank you so much for sharing your story. I do admit that I was despondent when I learned my Decipher score was high risk (and yes, I know many people have it worse than me, like your husband, but what an outcome). This is incredibly inspirational to me. I know my path may not be as successful, but I'm incredibly happy for the two of you. May your surfboards find a great wave.
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3 Reactions@jeffmarc This is a super important question. For the local surgeon, I really don't know, but if I stick with him, that's a #1 question.
However, since my Decipher score is high risk, if I can get surgery at Northwestern in a reasonable amount of time, I'm 100 percent sure they would have this protocol. Thanks for that super important bit of info.
This community is so incredible. Knowledge is currently my support system....and you all are helping me cope in a big way. Thank you
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