My Decipher Report came in and says that my Genomic Risk is High (0.66; 5 year risk of metastasis is 4.1%; 10 year risk of metastasis is 8.5%; and 15 year risk of prostate cancer mortality is 7.0%).
I initially thought 7% sounded pretty good, but my RO said no, it's not, and he recommends getting going with salvage rad and ADT very soon.
My PSA is 0.12 and my doubling time appears to be ~5 months. To me that's hard to square with a 15 year risk of mortality. 15 years would be 36 doublings and if I survived that long, my PSA would be 69 billion, which seems a little on the high side.
My MO advises watching and waiting until my PSA reaches 0.5-1.0, and says the risk of any additional metastatic action between now and that point is very slight. I want to believe him but it sounds like wishful thinking to me.
Questions:
1) Decipher claims that Gleason scores, rising PSA, etc are not taken into account in their calcs. Is that right? Are their numbers generally believable? Because mine seem wildly optimistic to me. After all, if someone said if I were to get irradiated and chemically castrated, I'd avoid a 7% chance of dying of a heart attack within the next 15 years, I'd probably say, "No thanks, I'll take my chances."
2) Any advice on course of action here is appreciated, as I'm getting conflicting advice from the docs. Also, I understand that the risk of recurrence after salvage rad is 30% higher in terms of relative risk if I don't do concurrent ADT but if anyone knows where I can find absolute risk numbers, I'd be really appreciative.
Many thanks in advance.
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ElRanchoDePoisonIvy
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Prostate cancer usually progresses slowly at first. If you intend on living for only 15 more years, there is no need to do anything -- just wait until metastases become unbearable and treat palliatively.
OTOH, if you want to go for a cure, so you can live out your life without worrying that PCa will kill you, salvage radiation with hormone therapy is a good option. Here's the data:
Without a Decipher test I had similar questions like yours. At PSA of 0.17 and DT of 9.5 months, 16 months ago, I started an adaptive scheme of Bicalutamide (monthly updates in my "An engineer's Bicalutamide Maneuvers" thread). Check it out if you are not the "one size fits all" type of person.
Thanks, I read your posts with a great deal of interest. I’m assuming your Casodex blood concentrations are calculated and not measured, right? Also, no one wants to take any more medication than they need, but I’m wondering if you noticed any obvious benefits from taking lower than standard dosage? Lastly, did you have salvage radiation treatment? Thanks again.
1) Yes, the Bicalutamide concentration is a calculated one but not with a half life fixed along the board. From a paper with selected half-lifes vs dosages values (see table bellow) and after a bit of curve fitting, I have derived a continuous function that I make use of. The interesting part of it is that this function is not monotonous but resembles a inverted tilde "~". Consequently, low dosages stay in the blood longer, high dosages live shorter and in between there is a trough followed by a hump. One thing I have found out is that I am a very good responder to low dosages, if I am going to judge that from the effectiveness of Tamoxifen. Once I tried to lower the Tamoxiphen dosage to 5mg/day from 10mg/day I started feeling soarness in my sternum.
2) During the 16 months I am up to this there are only two 10-day periods that I took the nominal dosage of 50 mg/day. Consequently, I can't give you any valid answer as I have never reached nominal dosage steady state concentration that sets-in to 99.5% after 46 days. Within my tried range of 6:1 ratio I haven't noticed any differences.
3) No, I didn't have salvage RT and try to push it down the road
My decipher test came back at .62, which is also high risk. I decided to do 6 months of Orgovyx in addition to radiation (Cyberknife after 2 months of Orgovys). I’m 1 month into the Orgovyx and so far no side effects. Decipher is a good tool and I also struggled with doing a 2nd treatment, but after some thought I would rather deal with it now before it has spread. Good luck.
Thanks. I’m coming around to the same thinking. The RO was recommending 1-2 years of Lupron, but based on what I’ve read, I don’t see much need to go beyond 6 months.
My Decipher score on a GS 4-3 was a whopping 0.97 so you are doing really well...for me the way I understad it is that the GS is the model of car you are driving down the road to progression and the genomic score is the velocity you will use to get there...that would be the way I undestand it and should be the proper use of genomic testing...I on the other hand with a GS of 4-3 and a Decipher of 0.97 went immediately to sRT (salvage). Here is what you can look at that helped me...
Another approach would be to obtain more genomic testing to corroborate the Decipher. Decipher is really good at mapping out what will happen to you IF YOU DO NOTHING!!! Now, what you do next is key...see this mapping which is the best I have seen.
Finally, my cautionary tale of what I would do differently if I could (by some miracle) start all over again. KEY my Brother is ED and the health of your penile organ. We patients dont think about that much as initially we are in full fight-flight mode and all we focus on is living and killing the cancer. Once we realize we are going to live a long time we turn to ED and know what? Many options are beyond your choice...so think about all three aspects at the same time; killing PCa - Incontenance - Erectile Function. Dont do them in the order I wrote, which is more typical...sorry to bury you...look up my posts and there is a lot more there you can mine for any gems I may have found...all the best of luck...Rick
Thanks for your insights. I’m tempted to go on Casodex immediately (already have the scrip), but otoh if I do that I won’t be able to get a PSMA scan. At least, I think I won’t.
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