Doc says that our goal is a cure despite the fact that I am a Gleason 9 with Decipher score of 1 , the highest for metatastic spread. (PSMA PET was negative.) The highest my PSA has ever been was 5.48 in December 2022 and it dropped to .09 with Testosterone of 14 in August two months after a shot of Eligard and 3 months of Casodex. Since then I have had 48 seeds planted via Brachytherapy and I am about to start EBRT.
Has anyone ever achieved a goal of "cure" or even 5 year survival with Gleason 9 ? I am now on Eligard (leuprolide injection) and taking daily 240 mg of Erleada (apalutamide). I am treating at a NCI CCC and the third largest cancer hospital in the country. I am on a much more aggressive treatment plan than the one the local urologists suggested.
Thanks in advance for any input you can provide.
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I've known several GS9s who have been cured so far. Because your PSA was never high, I think it is important to rule out occult metastases from time to time with scans. FDG PET/CT every few years may be prudent and PSMA if PSA rises.
Thanks so much Tall_Allen. I am just getting started on this journey and it looks like I just have to continue to monitor my psa and pray to God it does not. metastasize. Things get complicated then?
I’m coming up on 6 years since my diagnosis of metastatic Gleason 9 PCa. The details of my treatments are in my profile. I feel good. The only real discomfort I’ve ever had has been from ADT side effects. Definitely not cured but so far it’s under control.
Thanks firean ice. I will check it out. When my Urologist first called me in April, it sounded like I had weeks to live. Got a new Urologist. I wish you the best.
I do have an Oncologist at a NCI CCC, plus 2 top notch radiologists. One did my brachytherapy and has done thousands of them and another specializes is EBRT which I am about to begin.
We're coming up on 10 years since my husband's G9 Dx. We're definitely in deeper waters now, but it was smooth sailing for 8 years with only Lupron post RP and initial radiation to the prostate bed. May your more aggressive tact be successful!
I am Gleason 9 - PSA 3.5 at DX - with 3 mets in the left node chain in the pelvis (Oligometastatic). I had 44 sessions IMRT and am on Eligard, Zytiga and pednisone. I am 18 months into 24 months on ADT. My local MO and the folks at MD Anderson tell me that these treatments will give me 50% chance of being cured. I'll take it!!
CURE is a term I rather not use. However, I can state that as a Gleason 9 patient with no obvious metastases when my cancer was discovered (ten years ago), my prostate does not currently show signs of cancerous disease. This is after triple treatment (SBRT + IMRT + ADT). My current PSA is 1.1 ng/mL which makes me extremely happy. Moreover, I currently have no side effects, but who knows...
I thank Tal Allen once again who provided help to a total novice (on another prostate cancer forum).
Hi I am G9 T3bN1 BRCA2 take a look at my profile. I’ve done HDR Brachytherapy plus EBRT and 24 months of ADT+Abiraterone. I am now in the wait and see mode at 28 months with 3 month labs coming up next week. I wish you well in you treatment decision pleas feel to reachout to me.
hi. Gleason 9 (5+4) here. Bottom line is yes it can be put into remission for a long time (though cure is probably too strong a word). The important thing is to undertake an aggressive protocol for an aggressive cancer. It sounds like you have done that so you are doing well. I took a different but also aggressive protocol and 4 years later I have no evidence of disease. I found the below article comforting.
I was diagnosed in 2019 at age 56 with a 5.2 PSA, followed shortly after by radical prostatectomy. G9 with SVI+ and LN+, Decipher score was 0.71. Six months later, my PSA became barely detectable (0.03) so I had 35 sessions of radiation treatments and 24 months ADT. The ADT effects began to wear off about 16 months ago. My T is back to normal levels (though still below my pre-ADT levels). So far, my PSA remains undetectable. I was seeing an oncologist out of town while going through ADT. After final injection, he released me to my local doctor so I asked him to give me his opinion of the odds that I am cured. He said 60-70%, which I know is not a guarantee but I felt much better about those odds than if he had said 10-20%.
I know it's hard to almost impossible to lose that feeling of dread and foreboding with each PSA test, but I feel more at ease with every undetectable result. I hope you can feel more at ease as time goes on too.
I’m also 16 years in with a Gleason 9 - I too plan on being around for a good bit of time yet - the 5 year survival Nomographs are frightening, but they’re (I believe) based on fairly old data. For me it’s doing my best to stay positive and have a good outlook on life. Physically I’m not where I’d like to be, but I get around ok - fatigue is horrific for me, but I talk myself into getting up and greeting each new day, and I have a great support network of family, friends and PCa warriors to look to on the down days…
I was diagnosed oct1 2021. PSA 106. Gleason 9. No Mets. 12 months on lupron. 44 RT treatments. PSA now .01Keep your head up, your not going anywhere fast.
A cure is possible with G9. Our neighbor had radiation and 2 years of Lupron 15 years ago and is still at undetectable PSA and no evidence of disease. At 5 years his doctor used the word cured. We weren’t so fortunate.
I’m Gleason 9, stage 4 at dx, it’ll be 10 years for me in March. I’ll never be cured, but so far I’ve been able to treat it like a chronic illness that I must be vigilant about. Early aggressive treatment, good doctors who specialize in PCa and lots of prayers have been the key.
I'm fairly certain that men with your G9 have a HIGH probability of 5 yr survival.....in fact 10 yr and more! Did you check the prostate cancer nomograms at memorial Sloan website. They are based on MSK RP patients, but your treatment should be as effective, and several studies show more effective, than RP. The one caution is that the nomogram does not incorporate PSMA/Pet results nor Decipher results..... your negative PET would probably indicate eveen better results than the nomogram shows, while I assume your unfavorable Decipher would be a negative as far as results.
I continue to be dismayed about the unwillingness or the lack of knowledge of these Docs when it comes to giving the patients a perspective on probabilities of both outcomes and side effects of various treatments. To me , it is malpractice, but obviously it is standard of practice. Did any of your Docs have such a discusssion with you, or at least refer you to some written material or website for reviewing such info?
I'm a " trust but verify" mentality...for better or worse?
maley, thanks for the referral to the nomograms. All my docs say is that cure is the goal but i have not pinned them down to quantify it knowing there is no guarantee. However, your right, they should be able to direct me to some research that provides statistical info on survival based on my numbers. I think i am in a good place but its early and I am scared to death (o pun intended) that I become resistant to the ADT which then results in metastasis.
I was Gleason 9 according to prostatectomy pathology study. That was 12 years ago, I had salvage radiation 10 years ago, PSMA Pet scan showed two metastases this year so started Orgovyx a month ago. I do not expect a cure. Dr. “Snuffy” Myers (now retired) said it well: “With prostate cancer there is no cure, only the hope of durable remission.”
A friend of mine was diagnosed in 2000 with Gleason 9 and had RP. There was node involvement so he had two years of Lupron. Cancer spread to spine so they radiated the spine. He was supposed to be dead years ago but he is still alive. The radiation to the spine left him with diarrhea 24/7 and bowel incontinence but he is still here.
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You're in a much better place than if you had distant bone Mets visible at diagnosis. I guess it depends on what's there that can't currently be detected. If anything.
You are following the best course of action. Check out what Tall_Allen says about treatment vacations. Hit it hard when you are strongest. Decipher is a great tool because you know up front what you need to do.
Hmmm... so far I think I'm the only G10 here.. "cure"? Two of my MD's declared me cured. The one I most respect for medical knowledge said "nice remission.." (Dr. Charles Drake, PCa-MO, MD, PhD, researcher.)
I went the IG/IMRT route with the boost to the prostate, 18 months of ADT. It's about 3 years since I finished ADT - and my PSA has been consistently 0.22 +/-0.02. I'll take that. And since I'm 77 I'll take a durable remission. And as other - thanks to TA for the hardnosed reality he posts here. I don't always agree - but I do always respect his findings/opinions.
It's a two stage treatment (45 treatments) initial treatment is to the prostate bed and surrounding lymph nodes, this then progresses into more intensive treatment to just the prostate. This is I believe the current standard of care treatment. Total radiation for the entire 45 treatments was 83Gy (considered the max dose possible before unacceptable side effects start happening.)
Two years into a similarGL-9 diagnosis and all is well so far: see my profile for details.
I would strongly advocate a serious exercise program with resistance training ( weight lifting) it has limited the side effects that I expected with ADT and is great for my longevity and mental well being as well as slowing PCa progression.
Exercise and love are the two best non -SOC drugs in our battle.
My Oncologist and Radiologist both define cure as undetectable in 5 years. I want much more.
This site was a Godsend for me as knowledge is power.
You’ve chosen a good treatment path and are hitting it hard early, which I’m a fan of. Absolutely there are G9 cures. But because both the disease and durability of treatments for it are so heterogeneous, forget about percentages, prognoses etc.
When I was new to this and was asking naive questions, one to my oncologist was ‘what will you do if I have a recurrence in several years?’ He said, ‘I have no idea’.
The answer was troubling for the few seconds it took me to get it.
Meanwhile, intervene not only on the Pca, but aging itself! Be as strong and fit as possible and live your best life in gratitude wherever possible. Great luck to you!
The "I have no idea" is really true - in the 4 or so years I've been following PCa treatments, new ones pop up about every 3 months or so, and revisions in existing ones happen due to the data collected on how treatments have worked on men.
Is there a cure for PCa coming? I actually think there is (have a little tiny bit of inside info on that..) but it may not "cure" every variant. I think we'll see it within the next few years. It completed stage 1 testing, got FDA approval to basically skip stage 2 testing (due to dramatic results with stage-1) and stage 3 testing is now happening.
When will we know? Dunno, but based on how the testing is usually done, if a drug shows an outstanding response without too many bad side-effects, it may receive special FDA approval for immediate use.
Well, one of the studies has Weill-Cornell in NYC as a participating site, and that happens to be where I get some treatment for PCa. It's actually Columbia-Presbyterian/Weill-Cornell - two medical schools, Columbia and Cornell run a combined medical practice. I have 2 MD's at CP, and 1 at WC - but only one account for both, if that makes sense. You'll see different MD's being associated with one or the other school, but practicing for both organizations. Go figure.
And that is arx517 by ambrx biopharma, been following that for some time, not yet phase 3 but preliminary results will be presented at esmo 2023 in a couple of weeks
I hear and understand you. My decipher score was a 0.97 and sometimes I laugh as why didn’t they just tell me it was 1.0 and get it over with. But like you based on the Decipher, I through the kitchen sink at my disease. Definitely, you need to be on the aggressive side for treatment because you’re genomic risk is high.
You will most likely be on ADT for years if not, for the rest of your life. Listen to the current podcast that the health Unlocked has published on the effects of ADT long term. You need to know what these are. If you have been told all of the side effects, then consider yourself lucky, but more than 80% of men are not aware of the impacts of long-term ADT, especially on sexual health (which right now is of no interest, but which later looms large).
Look you got to have this medicine but it’s better to go into it eyes wide open and understand what’s coming. There are many things you can do now to prevent or reduce the damages that may well happen. But if you don’t know what they are and you wait until they happen, then your options are reduced, if not eliminated. So look at that and aware.
And remember your 8 years were spent in jail (for stealing a bike) .......... Hopefully you've got 8 year probation coming up..............Plus 8 more for good behavior......Plus 8 years on back in solitary confinement...........
I was diagnosed Gleason 9 in 2007. Bone scan showed that it was only in the prostate. So--Lupron for three months, to shrink the prostate. Then radiation five days a week, for 6? or 8? weeks. At that point, they planted radioactive seeds in the prostate, and sent me on my way. I was 56 in 2007, and I got 16 years of low PSAs before it came back this year. I haven't beaten it, but I'm able to live with it. I'm on ADT, and my PSA remains at < 0.1
My husband is almost 6 years in with similar features. He was Gleason 9, low psa (under 2.0) with no neuroendocrine features. While not cured, he is living normally with work and family. He’s had multiple different treatments and current psma scan and bloodwork shows no evidence of disease.
The team encourages us to not get hung up on the term “cure”, but to focus on addressing any issues as they arise and live an active, healthy lifestyle. We were terrified initially given his aggressive type, but have since learned so much about Gleason 9, metastatic disease. Per our docs, “he is still a kindergartner in terms of options, so don’t fret,”
As a 5 +4 Gleason myself, diagnosed 3 years ago and just completing 3 years ADT as well as having had RT, I share your concern but am doing well so far, other than the usual SEs. Studies by Kishan et al indicate good survival rates for G 9s and 10s at both 5 and 10 years with the best results for a combination of EBRT and Brachytherapy, which you are having. EBRT/ADT and RP came out about the same.
One of the things that has intrigued me about PCa treatment is the accuracy of diagnoses. A number of studies have been carried out comparing Gleason grading on biopsy with the same after RP, which is seen as more accurate. The results seem to have differed widely with some studies reporting little difference and others up to 40% regrading. The most recent UK study that I could find found that 40% of Gleason Grade 5s were downgraded with about half of these rated Grade 3. I do not want to raise false hopes and a lot of the research is based on biopsy grading so their findings apply to that but one can but hope. However, it does occur to me that this inaccuracy might be a factor in better outcomes for some people.
In 2013 at age 55, my PSA had increased from 4.1 to 5.2 ng/dL in six months (it never was measured above 5.2 so it was a low-PSA variant). I was diagnosed with a G9 5+4, cT3a (by MRI), with 6 positive cores, a couple at 100%, a couple at 70-80% and a couple more in the 20% range. My urologist was concerned, and could barely make eye contact at our final consult. Even he considered radiation would be a better option for my primary treatment.
So I had whole-pelvic IGRT to 54 Gy, and prostate to 79.2 Gy. Also ADT2, 3 years of Lupron + bicalutamide. PSA was rising about 6 years after all of that ended, so I chose to go back on permanent ADT (While admittedly not a common choice, I elected for an orchiectomy, so no more shots). I'm also on estradiol to manage side effects, and feel GREAT. My PSA remains undetectable over 10 years later.
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Got a new Urologist. I wish you the best.
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