Thank you in advance for the help. My husband is 53 years old and was totally asymptomatic when he just asked his GP in January “is there something else I should be checking, as I age?” He has no concurrent disease and is 53 going on 25 — he’s fit and active and otherwise very healthy.
His PSA in January was 10. At the recheck a month later it was 14. To condense — MRI showed a mass, a biopsy showed PC of Gleason 4+4 in all cores with extension to SV. The PSMA PET scan 5 weeks before surgery showed no mets. He had surgery 5/27 (Gleason 8 confirmed) and had 1/7 positive lymph nodes. Recovery was great and continence achieved quickly. His 6-week post-op PSA was 0.39, and a month later it was 0.44. He had another PSMA PET scan this week, and it shows a 7-mm tumor in the prostatic bed.
But, we just got back from a visit with the surgeon, who is our main doc. The plan was originally to do Orgovyx, but the insurance won’t OK it and the RO and urologist are really anxious to get ADT on board since they want to start radiation ASAP. So, hubby gets his first Lupron shot tomorrow.
Here’s the thing that hurts a little… We also got the results of the Decipher genomic test today. It says his Decipher score is 0.94, which is very high risk. So we are very disappointed about that. AND, the think that sucks the most… under the Genomic Profile Summary, his predictive response to ADT is 1 on a scale from 1-100. The urologist said he has never seen such a low score before. He says that basically this means that the ADT will do nothing, since hubby doesn’t have adrogen receptors on the tumor. But since the Decipher study isn’t really mainstream, hubby has to proceed with the Lupron. (I mean, we know that we can decline it, but we just don’t know what to do.) The good news is that the response to radiation response and docetaxel is excellent (78 and 75 out of 100, respectively) and the doctor was pleased about it.
It sucks. Hubby will go and get a stupid 6-month Lupron shot that this Decipher study shows will do NOTHING but make my poor hubby have all the side effects and none of the cancer-starving benefits.
I’m a veterinarian, so I understand the science and most of the medical stuff. And I understand that the doctors pretty much have to follow what is recommended by the general S.O.P. and literature. It just sucks. If he was a dog with prostate cancer (that doesn’t really happen, BTW), I would do the radiation and give him the docetaxel, and say screw the standard S.O.P! But I’m all about informed consent, and have never had anyone threaten me with malpractice.
Any insight that is offered will be appreciated. Thank you so much!
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Tigger2022
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The Decipher response to ADT is not validated. Also, response to ADT is not the same thing as response to ADT+RT. ADT and RT act synergistically. I don't think it actually says that he lacks an androgen receptor, does it? That is something they would learn from IHC, not Decipher. I know Decipher GRID uses the PAM50 classifier to classify the basal vs luminal subtypes. But ADT response to those subtypes is completely opposite in two different observational studies.
Hamid et al. found that Luminal B has inferior prognosis but is responsive to docetaxel (and presumably triplet therapy (PEACE1 and ARASENS) and also the triplet of abi+apa+ADT (ACIS)). They also found that Basal is more responsive to androgen-receptor-signaling inhibitor (ARSi) therapy and is less aggressive.
In contrast, Rahul Aggarwal (and Zhao ) say that Luminal is more responsive to ARSi. They found that Basal is more aggressive and should be treated with chemohormonal therapy, given the stemlike properties of at least some basal-derived metastases. This is more consistent with other cancers.
Thank you very much for all this information. I will sort through it today, as a lot of it is above my understanding, and I’m not sure how to answer your question about the divergent findings. It wasn’t explained to us, and I don’t see the answer to that on the Decipher results. It’s definitely my plan to read the links you provided, and look into clinical trials.
I meant those questions as rhetorical - no one knows the answers yet. This is an area of active research and labs around the world are exploring these issues. That's why, for now, going with the SOC is your best bet.
Very unlikely that his prostate cancer would not be hormone sensitive at this stage. I would ignore the response to ADT score and do the ADT. Get the best possible chance of a durable remission.
As I said to my husband, “the opinion of strangers on the internet shouldn’t matter more than the recommendations of our doctors” but somehow, hearing you guys confirm that the ADT is the right thing to do is reassuring, and I really, really appreciate it. We are really at the beginning of this journey in many ways, and it seems like we just keep getting bad news. It really helps to hear that we’re on the right path, and I appreciate your answer more than you can know.
Thanks. I've had to make similar decisions so I really understand. One of the things I thought about, especially if things went bad with the cancer, is someday wondering "what if?" Especially if I decided not to take a treatment that I could have. The last thing I want is to be thinking I could have done something and didn't. You only get one chance to do it.
Can you please explain the Decipher “response to ADT”? This wasn’t explained to me at all. I don’t recall seeing that on my report at all- my testing was done in Spring 2022. I too am (per Decipher) high risk. Once that popped up they keep referring to it over and over in treatment recs.
Hubby’s doc told us that the results show that the tumor is not responsive to ADT. But also told us that it was not a validated test, and that ADT was standard of care, which we understand.
For us, it was on page 4 of the Decipher results. The doc said that a lot of the pages are “physician only” but he gave them to us anyway. Not sure what the cut off usually is for “patient gets these sheets” and “physician only” but is it possible you don’t have the sheet where this is listed? Ours says:
PREDICTIVE (P.3)
ADT response 1 (out of scale 0-100)
Post-Op radiation response 78 (out of scale 0-100)
Docetaxel sensitivity 75 (out of scale 0-100)
PROGNOSTIC (P.4)
Risk of metastasis (average of multiple signatures) 77/100
Thank you! I haven’t read through your referenced articles yet, but I did want to answer the questions about the drugs.
We don’t really have an MO. We have the urologist he’s been seeing since March, who did his RP in May. And we have a RO. We are planning on looking for a second opinion, but everyone seems really anxious to start the RT, including us. He had the planning CT yesterday (and is sporting brand-new tattoos) and 39 units of RT are likely to start on 9/6.
When the post-RP PSAs were elevated, the urologist wanted him to do Orgovyx. We’re still in the process of fighting for that, but the insurance has denied it. It basically said “we’ll cover Firmagon or Eligard unless there is a reason this patient can NOT have those” but the urologist just said, “OK, we’ll just do Lupron then.” We even offered to pay out of pocket for the Orgovyx if that’s what he thought was best (hopefully, while we waited for the appeal process that’s happening to get worked out), but he didn’t feel the expense was justified. So, it’s likely that hubby gets Lupron (and no Casodex or anything else) TODAY. This morning we decided we will just have him get the 3-month shot instead of the 6-month shot while we wait to sort all this out, find a second opinion (which the urologist recommended, although he was kind of like “when this comes back in a year, you should find a MO” 😳), and see if there are clinical trials.
Any suggestions for a second opinion? We live in the western suburbs of Chicago and have (Orgovyx-denying aside) great insurance. My husband’s job is at home, and is very flexible and understanding. So any of the hospitals in Chicagoland are doable for us.
Thank you guys so much! I wish this Decipher stuff was available sooner. I know it’s not clinically validated, but it does give us so much to think about, and I wish we were able to do it before we’re staring down the rapidly-approaching ADT and RT.
Don't stay with the urology practice for cancer management. Get to an oncologist who specializes in prostate cancer asap. Don't let a urologist guide his care after diagnosis. Trust me on this.
I think we’re thinking right now he’ll get the 3-month shot. That gets him through radiation, in case any of the cancer cells are weakened by the ADT/RT combo. And also it gives us time to find a second opinion/MO/clinical trial. Does that make sense?
The office just called to schedule the 6-month shot, and my husband asked for a 1-month version. She will call him back, since she said she has to check to see if they have it.
I found i can tolerate the 1 month shot but the 3 month shot pretty much crippled my periformis muscle causing tremendous back pain and weakness. It is slowing my back workouts to a grinding haltDo you know why the 3 or 6 months has more side effects?
It has been 20 years since since the removal of my prostate. Since the surgeon found evidence of disease on the surgical margins and in the lymph glands he recommended the immediate start of ADT.
Yes, the side effects do suck (most Menopause symptoms) , but when placed on a scale with "side effects" on one side and "death" on the other, which one do you think is worse? My oncologist and I decided that as long as a reduced testosterone number resulted in an acceptable PSA (under 0.3) we would continue Lupron injections until my PSA became undetectable; then we would stop the Lupron injections until my PSA became detectable again. If it rose to over 3.0 while the PSA was low, it was an indication that my cancer was becoming ADT resistant and it was time to proceed to the next step.
By carefully watching the relationship between testosterone and PSA I have been able to "manage" my cancer. I'm still on intermittent ADT injections.
We often spend more time focusing on a single data point and not enough on tracking our cancer. However, at least for me, I believe focusing on correlations and trends has kept me alive and living fully for the past 20 years. Hope this helps.
Oh, absolutely. We get it. We’d rather have all the side effects but actually have the man himself. And we were totally on board until this genome test came back saying it might not even be responsive in any significant way to the ADT. So it just seems a little crazy to sign up for 6 months of a medication that might not even help, when shorter acting options are available. The urologist is really nice, but didn’t offer any of the other options to us (except Orgovyx, which our insurance won’t cover).
I’m in a similar boat at 52 with a Gleason 9. I am not having surgery but am getting docetaxel and radiation later in the fall. I was started on Eligard (3 months). I was on Casodex for 30 days and got the Eligard shot 10 days after starting the Casodex. My side effects have not been so bad except for the hair loss from the docetaxel.
I also agree with getting an MO and let them manage it rather than your urologist.
Best wishes on your decision! So many great resources and nice people in this group.
Thank you! We were just hoping to have options. Can I ask, what was the determination for you to have the docetaxel? Hubby’s Decipher test said that his tumor was really responsive to that drug, but that since it wasn’t SOC to treat with it at this stage (3 months post-op), it wasn’t an option. He joked that we wouldn’t want him to lose his hair (my husband shaves his head 😆).
Working on a MO! Have a request in for a GU MO at Northwestern already. Thanks for your response!
Agree the RT is most important, and short term adjuvant ADT is wise for maximal effect.Majority of RO/MOs are starting ADT prior to starting the RT, and often with bicalutamide to prevent flare. That is simply because that was the protocol in some trials. But appears not to be the optimal strategy. It appears that starting the ADT at the same time as starting the RT, and without bicalutamide is more effective. Please review the following and discuss with your doctors.
Holy smokes! That article could be game-changing in terms of decreasing side effects for a lot of people. Thank you!
I agree with TA and others that ADT enhances the effectiveness of radiation treatments. While on ADT your husband should consider a couple of things -- daily low dose cialis to prevent penile atrophy, and tamoxifen to prevent gynecomastia. I'll bet his urologist didn't mention either of these options; mine didn't.
Thank you! Actually his urologist did a pretty good job of talking about preventing penile atrophy. My husband started with a pump at 6 weeks post op (and started taking Cialis 5 mg right after surgery) and did daily therapy to maintain blood flow. Our doc had us see the PA who specializes in ED at his practice at about 8 weeks post-op, and she taught us how to use Trimix. (That works a little too well! We’re still tweaking the dose.) She also talked about higher-dose Cialis and Viagra for “relations” (as she calls sex 😆) but those haven’t been as effective for him.
Nothing has been said about gynecomastia and tamoxifen. If a man gets to come off the ADT, does it regress?
Yes, when testosterone comes back the boobies do shrink, but not entirely. I do an exercise to build up the pectoral muscles to help mask the problem. I lie on my back on a bench and dangle dumbbells out to each side and then bring them up above my chest. Called the 'fly'. Better than the bench press which only hits the upper part of pecs. He had a more thoughtful doctor than I had, by far. Of course I was a 66 year old geezer at the time.
Ha! Boobies! 😆 Yes, my husband has been a gym rat in the past, and is already back to lifting weights. He walks 4 miles every morning at 4:00 am, and is committed to staying active through all of this. Thanks for the recommendations!
Thank you! It’s not so much that he wants to avoid ADT (we’ve been resigned to his needing since before his surgery) so much as make sure it is actually necessary. And to have the right kind, and correct duration.
OK, I looked around and found a few people in our area that would be good, with specialties in GU oncology. My husband at this stage wants to stay close to us, and I found a GU MO who works 15 minutes from us through Northwestern. I also found a couple of guys at U of Chicago who sound great, but hubby wants to try the NW guy first. I really want him to hold off on the ADT until we get another opinion, but he’s antsy. At the least, hopefully we can get a 1-month Lupron injection while he starts RT and we get our ducks in a row.
We wanted to do Orgovyx, and that’s what the urologist recommended, but we couldn’t get it approved by our insurance. We have people fighting for us to get it approved, but the urologist was just like, “oh, Lupron will be fine. One shot and you’re done for 6 months.” After he just told us that the Decipher test says the ADT might not even work. Argh! We both really like him, for sure, but I just need more answers and a better plan. We even offered to pay the $2500 for the first month of Orgovyx while we figure this all out, but he said no.
And to address the telehealth thing. Yes, for sure. Telehealth would be great! But we’re worried that if it ends up with treatments, and he has to drive 1+ hours on a regular basis, he’s just not going to be willing/able to do that. (Yes, I know. It’s to save his life! But that’s what he thinks.)
Thank you!
Hey Tigger! Im sorry that he has this at just 53 . I too, got a worse #4 t-4 dx at 53 I was beyond surgery , over 7 yrs ago . No man wants adt or chemical castration.. However There is a reason Lupron has been used for forty yrs or more . It can work .I did it for 18 months until an orchiectomy let me drop the shots . I did 8 wks imrt ? I did a lot of high dose c ivs and alt med my first 18 months and I’ve stayed on the diet and nutrition plan from a Nat oncologist . I also did a test adt drug ( no longer available) that worked on stopping adrenal production of t for me until I quit it four months ago . I went into a long term no signs remission for over six years now . I hope that he can push this down too! Having loving care sure is a reason to live .. love is the best med. he has you advocating for him . You’ve got this! Get answers here and you’ll do the best for him . 🙏❤️
Thank you so much for your comment! So you chose surgical castration? I didn’t think that was an option (and wouldn’t be on the list for us right now). Glad to hear you’re doing well! I definitely love him — he’s really my favorite human, and plan to have him around for as long as I can.
I found myself in a similar asymptomatic situation at 56. I had a much higher PSA but a lower Gleason. I was and am active as a cyclist. I did not have all the ADT side effects you can get and the ones I had didn't bother me much. Just lucky I guess. I did SOC , 2 years ADT (Lupron and Zytiga) , radiation, and am coming up on 1 year since stopping ADT. No telling what the future holds just living and loving life one day at a time. Good luck to both of you and for a great response to treatment.
Good that the RT is starting promptly. There is some evidence that the testosterone flare from Lupron type ADT WITHOUT prior Casodex actually may be providing much of the synergistic benefit. If it were me, even given the uncertainty, I would opt for starting Lupron in close proximity to the RT without Casodex pre-treatment.
The short term ADT as adjuvant to the RT May be of benefit and will certainly not be harmful to the overall response, even if he is one who is not a good responder to androgen deprivation. There is just the short term side effects of ADT. ( which admittedly certainly suck.)
Best of luck to you both. Paul
PS. Loved the detailed analysis Tall Allen provided you. He is a great resource for us here.
Thank you so much for responding! Luckily, all those decisions are over, since my hubby finished radiation on 11/1. We’re hoping to get to what the MO calls “cruise control mode,” but can’t quite do it yet due to some liver value elevations we’re trying to figure out. Hubby was doing great on Orgovyx, and is really hating the Lupron he’s on right now — hoping that the liver thing can be figured out so he can get back to the Orgovyx…
Thanks again — I really appreciate you chiming in! I’m going to go read that study now.
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