Hi how many of us are gleason 9 + and have lived in excess of 5 years and what treaments are we currently on ? - Great John and I were going to tabulate the results and I think Long John has started a metastisesd club for us - A show of hands perhaps - Kindest raoul
How many of us with gleason 9+ have m... - Advanced Prostate...
How many of us with gleason 9+ have made 5 years +
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raoulmaher
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I have a Gleason score 9 and I'm coming up on year 30. But don't go by me.
How have you lived so long ?
Mono therapy, Mike every treatment for all it's worth.
Is the question about Gleason 9 or Gleason 9 that has metastasized? If the Gleason 9 is confined to the prostate, it may be curable.
Yep 999, asked many times, also asked " who isn't here anymore?" Neither answered very well. Statistics in trials etc. show not very many... I'm at 5 years in 2 weeks. Hope to get past the 5 yr mark, but driving many miles a week now for RT on 2 lane HiWay so who knows??
Im 5 yrs and cple weeks....they said 5 max g9 ductal w mets...but money cant buy love ...but lupron + erleada ( 16k$ ) month if not in titan trial can buy you time on this orbiting rock......same answer i gave at 4yrs...just changed number....
My dad had a Gleason of 9. He was diagnosed at age 80. He has had NO reoccurrence. He is now aged 97.
I had a Gleason of 7, and have had multiple instances of my PSA increasing.
Most men with Gleason 9 are cured.
TA do you mean if they are G9 but not metastatic they are cured?
Yes, often. It will occur more often with PSMA PET scans. After metastases are found, the Gleason score has no relevance.
At the risk of a stupid question, could you explain that for me? I'm Gleason 9 with metastases. I have had that scan and many others.
Gleason score describes the cellular architecture within the prostate only. It is associated with the risk that the cancer will metastasize. Once it has metastasized, it is irrelevant what the risk used to be.
Question to T.A. When biopsies are done to metastatic lesions are Gleason scores done?
No.
Is it possible that marks seen on the bones are from arthritis. I'm G9, had a PSA of 31 , and I'm 10 years out. I had 3 spots. Xtandi and Lupron all the way. Is there anyway to know for sure?
It depends on what the radiologist sees.
So am I understanding that once metastatic, the Gleason Score has no bearing on how the cancer will respond to treatment? Thank you as always.
Hubby, Diagnosed Gleason 9, psa 84 with metastasis in a few places in June 2016. So, 5 years and 9 months on the roller coaster ride. Exhausted most treatments listed in bio.
Im in that club
I am G9 , 7.5 years spread to lymph’s in pelvis and chest . Been on zoladex since almost day 1 but Had docetaxl then Rt even though it had spread, biclutanide did nothing for me but started abiraterone (zytega) in jan 2016 and still on it . PSA has been 0.12/0.15 for years . I also run thousands of miles a year and that I believe is why I am still here .
did you start running after your diagnosis, or before? Did you ever get a psa doubling time prior to starting on the zoladex?
Hi , I used to run a couple of marathons a year before I was diagnosed , nothing fast . Once I was diagnosed running gave me a purpose and sense of worth because I used it to fundraise for charity and raise awareness of prostate cancer and those things alone have made my life so much better . It’s why I wrote a book “Dead Man Running “ to try to inspire others to never give up. My PSA went from 342 down to 0.4 after docetaxl and biclutamide plus zoladex. That took a year . I never had a reading after I was diagnosed that went up because I went on zoladex straight away .
However that then failed and my PSA increased to 4.5 (I think ) . The doubling time was 3 weeks .
I started zytega in Jan 2016 and am still on that every day plus zoladex since diagnosis . My PSA has been 0.1 for about 4 years now .
I am convinced that running is what makes the difference . I have just finished day 6 of a 10 marathons in 10 days race . No one thought it would be possible but if you want something enough who knows ? Hope that helps .
So inspiring - I'm 46 y/o PSA 29 G8 with spread to lymph nodes and sternum bone on diagnosis. I was super active before diagnosis - sounds like I need to get back on it. First rounds of docetaxl ongoing now and Leuprolin for last 7 weeks
5 years, Mets was shrunk by chemo in 2018, eligard now on that, xgeva every 3 months and arbitrone, psa last check in January 1.8, no progression of the disease with cat and bone scan, feel good, no pains and work part time 21 to 22 hours a week at 70, life is good so far. No radiation yet, plan on making it to 90 God willing.
Hi Raoul. 7 years for me. Dx G9 T3b m0 n0 Dec 2014, Casodex 150 daily, RT 37x Jun/Aug, stop Cas 2/17, PSA rising, oligometastatic tumour in pelvis, SABRx5 Mar 2019. PSA rising Feb/21, ZOLADEX Aug/21 + Zytiga Jan/22. PSA stable, not dropping. Good luck.
My son didn’t last 2years. Well done those that have lasted.
I'm very sorry to hear that about your son 
What treatments did he do before he passed on?
I was diagnosed with metastatic Gleason 9 in 2013. Currently on Lupron.
What have you done other than Lupron? Have you done Lupron since 2013?
I have had a course of chemo and radiation to the prostate, a spot on the spine and a pelvic lymph node and have been on continuous Lupron since Dec 2013
Doing well. Have you thought about an AR inhibitor?
Even after I developed the lymph node met and PSA has risen slightly, my MO has not put me on any other drugs saying they will increase SE's such as fatigue.
My husband is definitely one of the lucky ones. Dx November 2016 with PSA of 64 Gleason 9. Mets to ribs, pelvis and femur. No lymph node involvement and tumour confined to prostate. Started on Lupron, 6 rounds of Docetaxel - PSA has been undetectable since August 2017. RP in October 2017. Has had no treatment (no ADT) since December 2019 and testosterone been back at normal levels since April 2020. Just monitoring now with blood tests every three months and yearly scans. Hope his journey gives hope to newly diagnosed.
Wow! We all wish...
How was it decided to remove prostate after having Mets?
What happened to the METS? They weren't treated, right?
Treated with chemo. Scan following 6 chemo rounds showed NED and all mets resolved. He responded very well to chemo, I seem to remember PSA dropped to 1.7 from about 4.5 (Lupron had reduced it from 64) after 2nd chemo session.
Great to hear!
the stuff that dreams are made of - one of my decisions is RP or not
67 months now, been on Xtandi plus eligard and .? The name escapes me this morning. Started the Xtandi December of 16. So far so good
Hi, I was diagnosed with advanced prostate cancer Gleason score of 9 with spread to bones and lymph nodes in November 2015, so I’m into my 7th year and I’m not giving in anytime soon.
What treatments have you had Mick?
I’ve been on Prostap since December 2015, and had 6 rounds of Docetaxel in the February of 2016. In March 2020 I had a rising psa so started aberaterone but it badly effected my liver so changed to Enzalutamide in the August, buy September 2021 this was also failing and a met in my hip was giving me real problems, I the started Cabazitaxel in November 2021 this has brought my psa down from 27.4 to 6.3, I still have 2 rounds out of 10 left. I am going to have radiotherapy to my hip next week to build on the gains made by my chemo and to hopefully reduce the last of the pain. I hope this helps.
Keep fighting and i wish great outcomes for you. You’re doing pretty well so far. It’s interesting how there are so many different treatment approaches out there.
Recently my oncologist actually said that she wouldn’t normally expect more than a 4 survival with my diagnosis. So yes doing well but still trying to do better and live every day.
thats great news that you are excelling. Live and enjoy life!
Diagnosed July 2020. Noticed that I was getting up 5 times a night to pee during the lockdown in the UK. Gleason 9 with metastases. Still working. Told I had two weeks to live when I was diagnosed. I'm 21 months in. (Five years is a high bar to set! I feel proud that I've lasted this long and am still active.)
I've been doing with Gleason for 9 in Feb 2012. . Radical Prostatectomy 10 years ago with Radio. Biological recurrence in March 2020 . On ADT since then. Played hockey last night...so not so bad I guess...
I qualify - nearly 6 yrs since Dx - currently undetectable and coping well .....
Not quite there yet, but will be in a little over 2 months, God willing. G10 and metastatic at Dx, currently on Lupron vacation and undetectable PSA.
G9 April 2017, had not spread. Cryo study in June at NYU. G9 again in 2019. Due to lower ant. resection and radiation in 1989, not candidate for surgery or radiation. On Lupron since 2020 with good results!
I’ll hit the five year mark in August. Gleason 9 with positive margins, no mets. I had anRP followed by 42 radiation treatments to the prostate bed. So far PSA is undetectable.
Found to be G9 in 2011 at time of prostatectomy, so over 10 years. A variety of treatments and trials, emphasis on exercise. Soon to go back onto supplemented ADT due to newly-discovered lymph node mets.
My dad is G9 for 10 years now . There is always hope .
Coming up 12 years in a month. Have been on ADT for 6 years. I stay very active
what did you do for the first 6 years?
RP (2011), followed 3 months later with SR (2011). PSA undetectable for 2 1/2 years then began to go up (2014). Began Eligard (2016) 2 1/2 yrs after this when PSA reached 6.6. Got as low as .1 but never undetectable again. Did successfully switch to Buserelin (2021) when Eligard failed (got as high as 21.2). Currently holding steady around 1.5. Due for a treatment review. QOL excellent.
Is the buserelin an adt? So when you switched from one adt to another, that caused a huge drop in psa?
Eligard and Buserelin are both "agonists" so hmmmm.
Interesting. good that it helped you.
Not me lol. It was Willydad. I should have stayed out of the conversation ha.
It's cool, I should have read the message trail closer. thx
As Campsoups points out, it is also a first line ADT. In my case it is delivered in an injection (every 3 months), but the dose consists of 3 identical beads (or cylindrical rods). Unlike the Eligard, it is not being mixed in front of you before the injection. I had an experience 3 years ago where my T & thus my PSA continued to rise after my 6 mth Eligard injection. My RO's hypothesis was that it was a bad batch and gave me another injection of it a month later, which was successful in getting my T back down. My own hypothesis was that the replacement nurse who injected me that day (who was new to the Cancer treatment centre) was not fully versed on the mixing involved with the Eligard (neither was I at the time), and rendered it a bad batch. He mixed it in much less time than my regular nurse did. Finally, when my T rose again a year ago (while still on Eligard), I was switched to the Buserelin, and my T responded dropping to 'Castrate' levels, where it currently remains. So I agree with him, hmmmm.
I had an injection like that once where the nurse was reading the injection instructions, just like she was putting a piece of furniture together. My ass hurt for 10 days.
Diagnosed 6 years ago. Wound up getting biopsy opinions by three pathologists ,since the first two reads were wildly dissimilar: GL 7 (4+3) by the first pathologist, and second opinion by Johns Hopkins was GL 9 (5+4).
Went for a tie-breaker by a third pathologist, who said I was GL10. WTF??
As for treatments, opted for immunotherapy and focal cryo, which brought the tumor load down from localized GL10 disease to GL7. Now relying on SBRT and ADT (Orgovyx) to get to a long term remission.
w.stith diagnosed Gleason 9 with prostate removal in 2014. PSA less than 0.01 for 6 months then started increasing. Went on Lupron and Zytiga for 9 months. PSA went to lass than 0.01 with no treatment for 5 years. Relapsed after second Moderna Covid vaccination with metastasis to L-5. Back on Zytiga and Lupron with radiation to lesion on L-5. Now on Lupron only for last 8 months with checkup at MD Anderson on March 24, 2022. Study Director thinking a out vacation from Lupron?? I plan to discuss study using darolutamide, ADT and chemo which was just reported by Mass General Cancer Center.
do you have the info on that study from Mass General?
Kmarquedant@mgh.harvard.edu (press release on Feb. 18, 2022)
Gleason 9 in 2008. Had surgery and IMRT + lupron for 6 months during IMRT. No treatment as of now but PSA slowly rising for last 10 years and getting to a dangerous level and need more treatment. So This June makes 14 years.
I'm at 3 3/4 years officially, but I suspect I had what were interpreted as bone Mets at diagnosis much earlier. Who knows?
Stable with PSA of 0.6 after 3 1/2 years of Lupron only (plus Xgeva).
However, you should clarify whether you were asking about metastatic (to bones or organs) or just Gleason 9.
I had misdiagnosed costochondritis which turned out to be a sternum tumour - bone pain for six month prior to diagnosis
2017 my PSA was 105 and Gleason 9 with bone metastatic disease. Treated with ADT and 6 rounds of Docetaxel then radiation to the prostate. Continue ADT and recently PSA is starting to rise. Will be having blood work every month going forward. Most likely will need to add another drug to the program. I still work as I was 52 years old at diagnosis.
Nine years diagnosed in May. Gleason 9, with metastasis in lymph nodes. Now in five vertebrae, one rib and pelvis. On Lupron and Lynparza and feeling pretty good. Hopeful for the next treatment to keep on keeping on.
riding the rollercoaster for nearly 13 years with node only disease, standard treatments nearly ended the ride a few of years ago, saved by Keytruda, undetectable for three years, no treatments now.
Gleason score 9 with metastasis to the bone since 2014.
GL10 at 7 years this month.
My b.f was dx'd. @ 02/2017. He had been through all kinds of treatments @ MD Anderson , but lately, everything failed. We were scheduled for a trial , but he got COVID. We have been extremely careful at home, but exposure to some family members resulted in this outcome. He was discharged from the hospital in very poor shape, so now we are facing this episode on our own. Please protect yourself at all times even if family members complain. I don't know if he will make it. Thanks for this wonderful site.
Geez! When it rains it pours! Wishing you some better luck soon!
I am 10 years in at Gleason 9 disease with metastasis from day 1.Currently on my second clinical trial, this one is a BiTE immunotherapy trial. Also having palliative radiation treatment to my bladder tumor.
Six years first week of June.
Husband, Gleason 9, had RP in May of 2016. Nothing since. Recently had a PSMA scan as PSA rose to .25. One lymph node involvement. Deciding next steps.
3.5 years here. Gleason 9, Mets to skeleton, PSA 4. Lupron and aberiterone from the start. Oncologist and urologist were very pessimistic, I thought it was over. Doing well, keeping very busy. living near my grandkids, I feel very lucky.
Gleason 10 ductal , March 2017 , Metastasized , chemo, loupron, zytiga
Thank you everybody that replied to my information request - Great John would have appreciated such a response too I believe ! - It would appear from some of the responses and some research I did that 20 + years ago that 2 years was the average time to succumb to Prostate Cancer especially in the Royal -Advanced / Metatastic stage and that capsule intact gave you the best chance of survival . Even though I, like many I suppose , have been told by our respective medical professionals - Oncologists etc that 5 years is currently what to expect that thankfully the research teams at various pharma and research companies are making some traction albeit slow - ( I shook a tin for Cancer research at 10 years old some 50 years ago ! ) that with the latest generation of drugs with more targeted radiation and chemo that 10 years could now be the norm - However I am reminded that some folk are not lucky and have severe forms of PC - Brain and BRAC and very short timeframes my heart goes out to them and their families ! - I think it is great that we all now have the internet for research - communication and messging and this gives us all a forum to share our treatments, experiences and an opportunity to help our peers ! - Thank you all to thoses that replied - For those of you that havent read my BIO , I am Metastatic and 6 months in the Journey behind Great John - who was so kind to let me know his experiences and hopefully I can pass this on ! - My hope is that all cancers not just prostate will be defeated eventually and that I get the most time I can with my partner not just 5 years ! - Thank you for those kind folk that have gone the extra mile on here especially Long John who is creating a Forum for us ( Lucky ! ) advanced guys - Thank you John - Oh and of course everybody else I am reading with interest all the replies even those off topic 
- As spock once said, I hope we all live long and prosper - Kindest Raoul - UK
I have, diagnosed 15 Jan, 2002, gleason 9, 5+4, 6 months lupron, rprostatectomy, August 17 2002, great until recurrence in 2004, then at .84 had radiation, stayed below .2 until 2015, at 1.5 went on eligard, stayed for 3 years, psa under .o8, vacationed 1 year, started eligard and xtandi, for 2 years, psa undetectable have had axumin scans no mets, but molecular lights on pelvic lymph and sac area, just now finished a 18 month vacation, psa currently .11 and rising, will have psma scan Oct 15, no doubt restart eligard and xtandi. Ive been fortunate, side effects have been minimal, some weight gain, but im athletic even at 76 years old now, FYI
2 years stage 4 bone met, pelvis
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