Need to make a decision and I’m absol... - Prostate Cancer N...

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Need to make a decision and I’m absolutely frozen.

SongofFred profile image
9 Replies

[I’m 58 and was diagnosed 7 weeks ago with Gleason 4+3, (9 of 16 cores positive, only two had 4+3. A few 3+4’s and the rest were either 3+3 or negative). Perineural invasion on both sides. Decipher score .88 showing Luminal B Proliferating cells. No spread shown on MRI].

I have been around the gamut, studied my brains out, and I’m still left with an unclear path.

I was setting up for SBRT with Kishan and then my Decipher score of .88 came out. It didn’t seem to phase him but he could tell I was the type that worried and suggested for peace of mind I might try HDR BB since it may increase my odds by about 10% (75% SBRT vs. 85% HDR BB) (I asked him for a from the gut number since, of course, the data on SBRT isn’t quite as ripe as HD brachy).

Kishan said he would offer bed and node treatment if I elected, but of course, that’s not standard and would increase toxicities. I’m also unsure if the prostate dose can match HD BB.

Due to the increased possibility of permanent and unforgiving urinary side effects of HD Brachy, I then looked into surgery. (Also, if HDR BB has 98% local control rate, is it safe to risk that 2% might be Luminal B cells? - don’t know if I’m thinking about that clearly)

I told the surgeon what some of the Decipher stats that were calculated specifically for my case:

50% chance recurrence in 5 years with definitive RT (no hormones)

7.2% chance metastasis in 5 years after RT or RP, 17.6% at 10 years.

19.5% 15 years risk of Prostate Cancer Mortality with RT or RP.

Those are the stats AFTER primary treatment.

I told the surgeon based on that, there was a good chance I’ll need salvage RT. He said two things:

1. You won’t want to do salvage RT until you’re fully healed and continent. This may take 12-18 months. Radiation will permanently stop the healing process.

2. Urinary toxicity from salvage is much worse than initial HDR BB because it’s hard to shoot around the bladder neck.

The nice thing about surgery is the PSA metrics are so simple afterward. PSA rise equals cancer. But lots must be sacrificed for that peace of mind including that you won’t be able to chase the cancer (except with ADT) for possibly over a year if your PSA is abnormal post-surgery.

Luminal B Proliferating doubles at twice the speed of the other tumor cell types, but if there’s a silver lining, Luminal B is by far the most responsive to ADT.

I am stuck stuck stuck and the clock is ticking.

My questions are, The Decipher score changed everything for me. Those numbers are horrific.

How much weight did you put in your Decipher score?

The choice is mine to make, of course, but does anyone have input on what they would do in my situation?

Would you take a bet on SBRT + ADT in this situation? Kishan’s MRIdian machine’s low toxicities look fantastic, but does Decipher tell me to go for absolute max?

Sorry for the rambling, my brain is frazzled. Any input is welcome.

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SongofFred
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Tall_Allen profile image
Tall_Allen

With the high Decipher score, and the PNI, you should consider yourself high risk.

The tried-and-true best therapy is brachy boost therapy. With HDR, the side effects are much reduced vs LDR. BTW- feedback from patients is a preference for Mitch Kamrava at Cedars-Sinai vs Albert Chang at UCLA to do the HDR brachy part of the treatment.

Kishan's SBRT protocol actually delivers a slightly higher dose (+13%) to the prostate, and I suspect that toxicity will turn out to be much less than the boost therapy.

I don't understand why you would even consider surgery, since the cure rates are nowhere near as good. And the toxicity of salvage radiation after surgery is much high than primary radiation.

SongofFred profile image
SongofFred in reply toTall_Allen

Thank you for this!

Was the feedback on Chang post-treatment? From what I see he’s using the latest MRI guidance and watching his videos he seems very careful and on top of it. What was the sense you were getting from him?

What do you think about Kishan adding bed and node therapy? One would assume the overall toxicities might be less than HDR brachy, maybe one could assume it might be as curative as HDR, but is that assumption worth the risk in this case? Would you take that risk with these numbers?

Tall_Allen profile image
Tall_Allen in reply toSongofFred

I think Chang does a good job. The reports were about his lack of communication and his insensitivity. I haven't met him myself. I have met Kamrava and think he is excellent (he was mentored by HDR brachy pioneer Jeff Demanes).

I think you are high risk and need a wider area treated.

This has everything to do with your degree of comfort and whether you are willing to take a risk with a newer protocol. HDR brachy boost has been around since 1986, I think. The UCLA trial of SBRT for high risk began in 2014, so Kishan has a lot of experience with it:

prostatecancer.news/2016/08...

Magnus1964 profile image
Magnus1964

Consider cryosurgery. It could spare you years of the long term side effects of radiation.

LongevityAT profile image
LongevityAT

My decipher was .90 and went with Kishan and Viewray. I had 20 treatments (started Firmagon towards end of radiation) due to high risk of toxicity to higher doses of radiation (ask Kishan about Prostox test). Only finished treatment 7 weeks ago so the book is still open but the initial SE's were minimal and have resolved.

SongofFred profile image
SongofFred in reply toLongevityAT

Great to hear. My Prostox score was low so I hope that might translate to overall less toxicity even with HDR brachyboost. I love the idea of the Viewray, but it looks like hitting the nodes with HDR BB might only increase the late toxicities by a bit and I just want to do everything possible to put this to rest permanently. I hope you get to as well.

Hockeyforever profile image
Hockeyforever

I don't have enough knowledge to make a useful comment on your situation. Fortunately I know a retired urological surgeon who use to train the urological surgeons in the city in which I live. I contacted the urological surgeon, considered the best by my friend, and fortunately was offered a surgery date without a long wait time. Last week I saw the retired urological surgeon I know and he asked how I was. I answered ''I'm as good as my last PSA reading''. He reassured me that I'll be around for a long time. I hope he's right. You are welcome to read my profile and posts here. I wish for the decision you make, the outcome you want.

esperandrich profile image
esperandrich

You might want to buy the book The Keys to Prostate Cancer from Dr. Scholz on Amazon and dig deeper into Tall Allen's info.

Both say the same thing. For high risk the best treatment is brachy boost therapy which is the radiation (I did Protons) either of the brachy treatments (I did LDR) and at least 1 year of ADT (I i did 18 months of Lupron).

j-o-h-n profile image
j-o-h-n

I second "Magnus1964 suggestion about "Consider cryosurgery. It could spare you years of the long term side effects of radiation".

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/272023 9:52 PM DST

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