Decipher risk: prostatectomy RP vs radiation.

@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!

@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.

@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!

@fritzo I am not aware of a similar nomogram prediction on recurrence after radiation treatment. I think such a nomogram would be more difficult to create because there are so many radiation types (IMRT, SBRT, LDR brachytherapy, HDR brachytherapy, and combinations of these) along with various time lengths of ADT involved. As an example, in my own case I had 26 IMRT sessions, one HDR brachytherapy session and one year of ADT.

The side effects from an RP are harsh, immediate, and often long lasting. Those of us choosing radiation as a primary treatment want to avoid those severe side effects and typically choose an aggressive radiation plan such that the odds are good that primary radiation is the only treatment we will need for life. But even if that didn't happen, as @brianjarvis mentioned there are numerous treatments that can follow radiation if need be, even radiation itself. SBRT can be used as spot radiation multiple times where ever needed. All the focal therapies can be used on metastatic spots as well. What can't be done twice is wide area radiation across healthy tissue that has already been radiated. But a recurrence after radiation as a primary treatment is not likely to need that. And if a systemic treatment were needed for a recurrence after radiation as a primary treatment, there are the new drugs like Nubeqa and new procedures like Pluvicto. According to @jeffmarc there are also numerous new treatments under development right now that will be even better than what we have today. As such, I think it is an outdated knock on radiation as a primary treatment that follow-up treatments are limited.

And yes, joining the Inspire cancer forum is very worthwhile. It allows for lengthy blogs as you can see mine here https://www.inspire.com/m/williamwattsmith/about/

@wwsmith Instead of nomograms, men might even have to seek out one-by-one individual clinical trials like COMPPARE, PARTIQoL, ProtectT, FLAME and many others that look at each of the treatment types or treatment methods, compares them, and then publishes the data. That may entail looking through dozens (hundreds?) of clinical trials for the one(s) that might apply to one’s specific diagnostic situation.

As just one example, in 2023 the results of the ProtectT trial (https://www.nejm.org/doi/full/10.1056/NEJMoa2214122) came out comparing external radiation (IMRT w/ADT) against both surgery and active surveillance, and found that survival rates comparing surgery with radiation are statistically equivalent no matter what treatment chosen (and that active surveillance was actually only statistically a little worse), and that the treatment decision is mainly decided on 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.”).

And even the ProtectT trial results I would supplement with more research because ProtectT looked at men who were treated between 1999-2009, well before today’s next-generation imaging techniques, and modern diagnostic tools and treatments were available. (I first heard about that report on the evening news (https://www.nbcnews.com/news/amp/rcna74512), and then had to do some serious digging to find the trial report: ProtectT.)

@fritzo I am not aware of a similar nomogram prediction on recurrence after radiation treatment. I think such a nomogram would be more difficult to create because there are so many radiation types (IMRT, SBRT, LDR brachytherapy, HDR brachytherapy, and combinations of these) along with various time lengths of ADT involved. As an example, in my own case I had 26 IMRT sessions, one HDR brachytherapy session and one year of ADT.

The side effects from an RP are harsh, immediate, and often long lasting. Those of us choosing radiation as a primary treatment want to avoid those severe side effects and typically choose an aggressive radiation plan such that the odds are good that primary radiation is the only treatment we will need for life. But even if that didn't happen, as @brianjarvis mentioned there are numerous treatments that can follow radiation if need be, even radiation itself. SBRT can be used as spot radiation multiple times where ever needed. All the focal therapies can be used on metastatic spots as well. What can't be done twice is wide area radiation across healthy tissue that has already been radiated. But a recurrence after radiation as a primary treatment is not likely to need that. And if a systemic treatment were needed for a recurrence after radiation as a primary treatment, there are the new drugs like Nubeqa and new procedures like Pluvicto. According to @jeffmarc there are also numerous new treatments under development right now that will be even better than what we have today. As such, I think it is an outdated knock on radiation as a primary treatment that follow-up treatments are limited.

And yes, joining the Inspire cancer forum is very worthwhile. It allows for lengthy blogs as you can see mine here https://www.inspire.com/m/williamwattsmith/about/

@fritzo

Awe, Fritzo , don't even mention it, I am glad I was of some help : )

Please feel free to ask additional questions, if you have any.

Thanks for well wishing < 3 : ))))
Hopefully we will ride very long wave of no BCR, but we have to be prepared and vigilant with such aggressive features ( my husband had cribriform and IDC and his 4+3 gleason was upgraded to 4+5 after post surgery report ), but as old Romans used to say "dum spiro, spero". ; )

@fritzo I wouldn’t choose cryo for my primary treatment either - too many unknowns. But, for a recurrence which might be a single solitary lesion, cryo (or brachytherapy, or SBRT) might be an option for salvage treatment because they’re very targetable.

Yes, salvage radiation after primary radiation carries risks, especially to rectal tissue (which doesn’t tolerate radiation well). For that reason, I chose proton radiation that, due to its Bragg-Peak characteristics had little entry-dose, scatter, or exit-dose - so is unlikely to hit the rectum. (See attached Bragg-Peak graphic.)

And just-in-case, we used the SpaceOAR Vue rectal spacer that reduces by 70% any radiation that might approach the rectum. (See attached graphic.). That leaves my re-treatment options open in case I need to consider it later. (I know two guys who had repeat SBRT because their recurrence was just a small lesion.)

Also, if they’re skilled enough not to overshoot the prostate, there’s little risk of bladder/bowel injury. Again, that’s another reason I chose proton radiation that, due to its Bragg-Peak characteristics had little entry-dose, scatter, or exit-dose - so is unlikely to hit nearby, otherwise healthy tissues and organs. And I chose a proton center that were specialists in treating kids’ brain tumors. My thinking was that if they can hit a pea-sized tumor deep in a kids’ brain and not cause any surrounding brain tissue injury, they can certainly hit a walnut-size gland and not cause any surrounding tissue injury.

He’s right, follow-up hormone therapy doesn’t kill the cancer. But the doublet therapy combination of an ADT (Eligard, Lupron, etc.) + an ARPI (Xtandi, Zytiga, etc.) will starve the prostate cancer, interfere with its androgen receptors, and weaken it so much that other cancer-killers used will be more successful.

If your doctor won’t order a genetic test, or your insurance company won’t pay for one, you can get a free genetic test here: https://www.prostatecancerpromise.org/

@wwsmith Instead of nomograms, men might even have to seek out one-by-one individual clinical trials like COMPPARE, PARTIQoL, ProtectT, FLAME and many others that look at each of the treatment types or treatment methods, compares them, and then publishes the data. That may entail looking through dozens (hundreds?) of clinical trials for the one(s) that might apply to one’s specific diagnostic situation.

As just one example, in 2023 the results of the ProtectT trial (https://www.nejm.org/doi/full/10.1056/NEJMoa2214122) came out comparing external radiation (IMRT w/ADT) against both surgery and active surveillance, and found that survival rates comparing surgery with radiation are statistically equivalent no matter what treatment chosen (and that active surveillance was actually only statistically a little worse), and that the treatment decision is mainly decided on 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.”).

And even the ProtectT trial results I would supplement with more research because ProtectT looked at men who were treated between 1999-2009, well before today’s next-generation imaging techniques, and modern diagnostic tools and treatments were available. (I first heard about that report on the evening news (https://www.nbcnews.com/news/amp/rcna74512), and then had to do some serious digging to find the trial report: ProtectT.)

@brianjarvis
So much information condensed like it's a radiation users guide. This is a huge resource and I'm very thankful. I've been trying to piece this all together.

Proton Beam: Funny, I wondered if the nearest center wouldn't handle my case because they treat all cancers and would be overloaded. But, that looks to be an advantage.

Spacer: Yeah, I was definitely going to demand that and it was in the local protocol

Hormone therapy combination: That is super usefill information as well.

And then you close with a free genetic test – mind blown! Thank you so much