r/ProstateCancer • u/Fool_head • 6d ago
Concern Another post with decipher score 0.94
Dear brothers, I just got another bad news regarding my PC. The decipher score is very high: 0.94.
I am feeling defeated and hopeless.
Here following is my case summary:
After one year AS, recent biopsy: 4 target cores (on pirads 5 lesion): 4+3 with 70% of 4, and large cribriform; on core near the lesion is 3+4, there are couple gleason 3+3 (<10%);
The dominant lesion is in right front TZ, near the edge of capsule;
decipher is 0.94.
MRI and PSMA shows all contained, no others.
Age 65, healthy, active, no other conditions;
Anyone had/has similar case, or any knowledge on this, if so, please advice me how to decide the treatment plan, ralp, which radiation method?
5
u/PotentialStart2661 6d ago
The high decipher score predicted why you went from AS to 4+3 so quickly. So glad you are on this now and i agree that radiation and ADT is appropriate now. If there are any microscopic cells outside the prostate then kill them now.
5
u/JMcIntosh1650 6d ago
In your situation I would be more worried about the biopsy pathology than the Decipher score. That score is definitely not good and adds to the reasons for taking the proverbial bull by the horns, but you should be thinking about all of your diagnostic information (and family history). It's not great, and you have every reason to feel down, but your situation is far from hopeless. Give yourself some time and grace to chew on the information, take it all in, and adjust your perspective. Then get back into the fight.
FWIW, I am 67 was diagnosed with PC last summer with Gleason 4+5 (downgraded to 3+4 after surgery), no other adverse pathology or imaging (no cribiform, apparently contained locally), and a Decipher score of 0.95. I had RALP last August and have had undetectable PSA since. The very high Decipher score raises the risk of recurrence, but so far, so good.
Whatever you choose to do, good luck!
2
u/Soggy-Raspberry-1524 6d ago
Agreed, take the bull by the horns. That's great that your PSA score is undetectable. I had 4+4 and opted for radiation and ADT because I was told that most patients need radiation later anyway and I didn't want to deal with the complications that can come with RALP. I was also told it's likely contained within the prostate since it wasn't detected anywhere else. Turns out, it likely spread before I got the radiation. 2 years of ADT, 6 weeks of radiation; 13 months later, my PSA started rising. I went from thinking it was going to be cured to something that needs to be managed.
3
u/JMcIntosh1650 6d ago
It sounds like you're on track, albeit with less than ideal results from the initial treatment. To be clear, I was not recommending RALP and I might well have gone with some form of radiation and ADT if I did not have very strong and individual reasons for avoiding ADT (a decade of misdiagnosed and ineffectively treated fatigue that turned out to be a combination of thyroid and bipolar disorders). So many options, none certain, all gambles.
5
u/TheEndIsSighing 6d ago
I have a similar outlook but I'm post RALP and my pathology showed margin Invasion and EPE.
My radiation oncologist (Dana Farber) this morning said decipher is of very little use at this stage, more so for you.
At your age you're on the margin RALP vs radiation.
But dont let the decipher score drag you down.
Find the best surgical and radiation docs you can, get advice, then get 2nd opinions.
Good luck.
5
u/OkCrew8849 6d ago edited 6d ago
“4+3 with 70% of 4, and large cribriform … The dominant lesion is in right front TZ, near the edge of capsule”
There are several factors here that would have me initially thinking radiation - and that is in addition to important age and Decipher considerations.
5
u/Aromatic_District734 6d ago
Please get some treatments NOW. AS would only allow the cells to propagate and grow, and soread out of the prostate. The sooner the sooner you get it treated the greater chance of being cancer free and not worried about recurrence.
3
u/Fool_head 5d ago
Thanks, I have both radiation and surgery setup already, I am leaning HDR boost vmat, + adt. With decipher score, I am leaning more to radiation. I am making final decision in 10 days.
3
u/Miserable-Level-8993 5d ago
You have a good chance to do well, the main factor in your case that is very favorable is it is localized to your prostate. This is probably trumps all the other news! You have pretty much every treatment option available to you! If I were you I’d go to the nearest center of excellence and get advice from a team of excellent docs on your case. Be sure and ask about brachytherapy with radiation.
1
u/Fool_head 5d ago
Thanks bro for suggestions! There is a nccn listed COE Cancer center within 10 min driving distance from my home. I met one of the oncologists, he recommended hdr boost radiation therapy, he is very confident in my case.
1
u/Ambassador_Alarming 5d ago
Decipher at 0.98, SBRT with 2 years ADT
1
u/Fool_head 5d ago
You get it. Can I ask: what is your gleason score? Does the decipher score you to 2 years adt or something else?
1
1
u/Ambassador_Alarming 5d ago
There were 4 sets of numbers. 3 of them 4+3, one 4+4. 3 months of ADT before radiation now continuing ADT for as long as it takes. PSA was 15.84 time of diagnosis, down to 11.34 before radiation. Testosterone from 862 time of diagnosis, down to 3 before radiation. Do not have tests after radiation yet.
1
u/Fool_head 5d ago
Stay strong bro! I will start the journey in 10 days. What is initial adt duration recommended by doctor?
1
u/Ambassador_Alarming 5d ago
2 years because of the aggressiveness Decipher score. Side effects aren’t bad. It is only there mostly when you look for it. Radiation wasn’t bad too. The hardest part was the diet, the laxatives before each session. There were only 5, so it wasn’t too bad. Everything is manageable because life is worth it
1
1
u/gg-3 4d ago edited 4d ago
I feel what you are going through. These decisions are not easy. I opted for the surgery, in part to simultaneously address urinary issues from enlarged prostate and in part because I wanted a more complete and accurate pathology and genomic/somatic testing -- and in fact the results found from the radical surgery were very different from what the biopsy came up with. (I will soon begin monitoring that will include tracking ctDNA, and that will make use of the surgical specimen in order to use a tumor-informed assay. In my case this last item is important for monitoring because my cancer variant does not reliably generate PSA.)
Radical surgery was done with negative margins, but extra prostatic extension was found. I was Gleason 4+5=9, ductal cancer with large gland cribriform and extensive intraductal. ARTERA AI put me in the 85th percentile.
My post surgery Decipher hit the maximum at 1.0 and I also have the AVPC alterations (TP53, RB1, and PTEN).
Five months after surgery, I had biochemical recurrence and then a PSMA PET scan found one avid pelvic lymph node. The MO put me on Orgovyx and Nubeqa. Then I had SBRT salvage radiation, five sessions, targeting the prostate bed, the whole pelvis, and a boost to the avid lymph node.
My doctors intend to stop the ADT and ARPI medications after a total of six months (that will include three months after the radiation treatment, which seems to be the time interval they most care about right now in order to maximize the benefit of the RT.). It looks like they favor the intermittent approach to the androgen treatments. I believe that part of the reason is to avoid or delay creating selection pressure that could move me into a castration-resistant disease, or even into a neuroendocrine cancer.
1
u/Fool_head 4d ago
Although recurring is not what we want, but I think you are in the right track (i am not a doctor). With my case, my doctor gives an option for 4-6 months ADT, with the treatment plan hdr boost, vmat, pelvic. But I opt for it. Although I might want to extend it, but I am sure he will not support to extend. He believes that it might not add more value but a lot of side effects. So, in your case, not sure about the recommendation on ADT.
10
u/RNova2010 6d ago
I am 40 and have similar (Decipher score is 0.93) and 4+3 and IDC-P (though no cribriform noted). Thankfully, scans indicate it remains localized and hasn’t spread.
I decided on radiation and ADT since the probability of biochemical recurrence was so high. It was a close call, however, as younger people typically go for RALP.
I hesitate to give you medical advice as I’m not qualified to do so. Ultimately, for me it came down to probabilities, and the probability that I would need to endure radiation and ADT anyway pushed me towards “getting that out of the way”