I noticed it was more common in those with a Gleason score of 7 to make it past 5 years, but have never read of any stories like that with those at a higher Gleason grade…. I find this to be very troubling
EDIT- wow. I did not think I would get so many responses from all of you amazing people. Thank you for taking the time to spread some positivity and provide hope to me and my family, and to all others who have come across this post. I pray for all of us, the family members, the spouses, and most importantly the men who must endure this disease. You are all incredible. — Michele
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I looked it up again, one is now living 17 years after diagnosis and the other 14 years. The first one does about the same as Irun mentioned below healthunlocked.com/user/Iru.... He does SOC and exercises for triathlon. I think the cancer has a hard time to kill an ironman.
The second one follows Dr. Myers advice. He does intermittent ADT combined with Dexamethasone. He takes a holiday, when his PSA gets down to 0.01 mg. Why this combination works so well for him I do not know. Dexa stops testosterone production by the adrenal gland which Lupron can't.
I’m also Gleason 9 with bone Mets dx right out of the gate. My PSA was around 54 when I got biopsied. My initial reaction was, damn if I went earlier maybe I’d have a better dx. Truth is, I has 4 psa tests between 35 and 44 that were all in normal range. I have no genetic predisposition and was relatively healthy otherwise. (I did smoke however). Covid kept me from going for 8mo. At age 48 I was told I had stage 4. My Dr.’s said that it made no difference. I’ve found nothing in my research that has contradicted that yet. Everyone’s different, but hopefully nobody out there has been beating themselves up with ..”if I had only…”
It is cancer. Our knowledge is imperfect. Our diagnostic tools, although better, are still relatively imprecise.
Nobody knows for sure how long because we really dont know for sure how it all works for a given individual.
It is a balancing act. You cannot pretend its not there, but at the same time you cannot dwell on the darkness.
Have hope. PCa is not an orphan disease with precious few researchers spending time trying to beat it. There are some pretty smart people out there looking to, at a minimum, extend the lives of the stricken, if not outright cure us. For example, read this post and others by the same author describing their experience in a Phase 1 clinical trial.
You can read my story... I'm half way though year 6 right now, so some of us get past the 5 yr mark at Gleason 9 with bone, nerve and venous mets at the start + two lymph nodes..
I'm hopeful - does that count? Diagnosed stage 4 in July 2018 with 152 PSA my last PSA in September 2022 was 0.08. But I'm very sure there are many on this site with far more runs on the board than I have.
Gleason 8, initial PSA at diagnosis was just over 1700. Extensive bone mets from my neck to my knees, but fortunately no soft tissue involvement. That was nine years and five months ago at age 67. Now 77 and I have squeezed a lot of living into the last nine plus years. Don't ever give up! Good luck!
Oct 30th will mark the 5th anniversary of my PCa diagnosis. I was Gleason 9 with hip/pelvic bone mets. All things considered I’m doing well. I’m on my 3rd round of ADT. Aside from the ADT side effects I’m asymptomatic.
No idea how far I'll make it; but I'm not making funeral plans for any time this decade yet.
I'm freshly diagnosed Gleason 8 and Stage 4B with bone and lymph mets. I might die tomorrow from a heart attack, a stroke, a car crash or even a natural disaster... so dwelling on the cancer's impact five years from now seems less daunting. I'm doing what I can to prevent all those eventualities.
Most things I've read suggest not many IN THE PAST have made it past 5 years, but those numbers don't include men who are new to the disease and have all the latest greatest diagnostics and treatments already here and coming down the road. Plenty of people here saying they've made it longer than 5, and as the years go by that number should go up.
I notice you're a female, so not asking about yourself. Keep a positive attitude for both yourself and your loved one on this wretched journey.
Going on five years. Gleason 8 and 9 across the board. PSA 0.1 since first month treatment Zytiga, Eligard, Provenge. I intend on being a good statistic and stick around for another five at least. Never give up Never surrender. Leo
Still here now 57 , 8!years in , I have run 15,000 miles, over 200 marathons (inc 2 on docetaxl) so believe it’s possible . That said , don’t use beating 5 years as a target , live every day , do all the good stuff whenever possible , if you get good cards you will still be doing in 10 years and if not then at least you had great times whilst you could .
I wrote a book, Dead Man Running , on Amazon about my journey . May have to write book 2 in another year !
It helps that I enter multi day events so have just done 4 in 4 days and in July ran 10 in 10 days, its amazing what you can achieve. Before I was diagnosed I think I had only run 12 in my whole life. I wrote a book, Dead man Running, to hopefully show others that a rubbish prognosis does not mean we have to give up! Carpe Diem
I am Gleason 9 and bone mets and have just passed 5 years. I feel well and living a good life. None of the drugs such as Xandi, Enzalutamide or Zytiga worked for me. I started LU-177 two years ago in Australia and have outstanding results. I had two infusions in 2021 and PSA dropped from 50 to .56 and two infusions in 2022 and PSA dropped from 15 to 3.5. No one can tell me how many LU-177 my body can tolerate, I agreed with my nuclear oncologist that I would only do two at a time and try and stretch out the number of LU-177. My second infusions were not as successful as the first based on PSA reading, but not bad. The cancer maybe getting smarter. Time will tell.
Your cancer may be getting smarter, but the science to beat this awful illness is also getting smarter. My father has a terminal PCA diagnosis. I pray that the science outruns this cancer. Time will tell.🙏
it is an important consideration that I am contemplating after 2 Lu-J591 infusions in Australia. Continued repeats of same treatment have a diminished return for many. Yet bone marrow degradation is cumulative. So perhaps alternating a different treatment between the two infusions makes sense? Perhaps Cabazitaxel, or BAT (as I am doing)?
Everyone is different in my case I had Gleason 9(4+5) at one end of the prostate and 3+3 at the other end. PSA was only 5.8, while biopsying the prostate they discovered bladder cancer and after a Pet scan they discovered Leukaemia via a biopsy of a lymph gland in the neck . Here I am 6 years later, prostate under control via ADT, on treatment for both bladder and leukaemia which is the most aggressive form. I look forward at 81 to reaching 90. My eldest brother is 96.
I have a sign on the wall of my study that reads YODO ( You Only Die Once) underneath it reads " Live Life to the Fullest.
Gleason 9 dx Dec 2013. Suggest ignore the 5 year stats and treat the 10 year ones more optimisticly. Im targeting 15 but more worried about cardio than PC. Age almost 78.
hi, I was diagnosed in Autumn 2015 with a Gleason score of 9 with mets to the bones, and I’m still enjoying life. I have a few issues but still have some treatment options left.
I was diagnosed with Gleason 8 and extensive mets. At the time, I worried a lot about how long I might live and straight away, began to 'put my affairs in order'. Now, nearly 4 years in, I don't give it a thought. I am 77, so that may be part of it, but, the main reason is that I found it too wearing to continually worry about how long I might have left. Until March this year, I was on Zoladex alone, and although my PSA was only 0.5, a bone scan showed extra mets, and I am now on Zytiga and Prednisolone. At some point, these too will become ineffective, and I will go on to something else. Or I might have some more chemo. I can't predict what will happen, so I just take it as it comes. I'm not a warrior. I'm not fighting a war. I told my wife I would try to live as long as I possibly could, and I that is what I will do.
Without being rude, your question is really pointless because, even if you found many others who started with gleason 8 and mets, and who lived a long time, it doesn't mean to say that you would as well. So, try not to dwell on your longevity too much, and just try and enjoy what time you have left.
Diagnosed in 2017 with Gleason 8 or 9 (depends which biopsy report you believe) at 56 years old and extensive lymph node Mets.
I’ve had numerous approved and study treatments including 3 types of chemo, Lu177 and CAR-T. Never the less after about 4 years the cancer became hormone resistant and spread to bone. Original mutation was tp53 but now it’s evolved to pik3ca, egfr and fgfr1 - these have a poor prognosis.
I’m back on Jevtana and looking for another clinical trial, remaining hopeful because I can’t not be hopeful. Intellectually I know I probably only have a few more months.
So I think the answer to your question is that some people survive well past 5 years while many do not - it depends on the treatments you receive and how the cancer randomly evolves.
This thread has been very useful in that it opened the opportunity to look at the profiles of the 5+ year survivors to see what treatments they've had along the way. Of course, everyone is different and what works for one will not necessarily work for another, but given enough anecdotal data, it may help treatment choices.
Obviously, you won't get any data from those who didn't make it this far but the last statistical info I read said there was only a 30% chance of surviving 5 years after Dx of stage 4 cancer with extensive distant mets - such as I have
My husband is gleason 9 and just passed the 5 year mark in August. He had multiple mets to bones and PSA of over 677. Diagnosis at 49 years old. He works, enjoys life... even surfed quite a bit this summer! Lots of info you read is outdated- so many new treatments and treatment plans since most data has been published. My husband's docs hit it hard in the beginning- and my husband has worked to stay active and enjoy each day. I think all of that- along with fabulous modern medicine- has helped!
If you look in my profile youll see the journey- he is still on lupron; zytiga and prednisone; abd also Xgeva. PSA has SLOWLY gone from 677 to 1.7 in the last 5 years. Always trended down but current 1.7 is the lowest so far!
I love all these stories, 2015 all 12 cores G9, heavy tumor load, India, 2019-2020, Lu-177 PSA starting to rise from a low of 0.06. Having my second PSMA scan Wednesday. Current PSA was 0.57 12 weeks ago , we will see where we are....Everyone keep trucking, Blue Skies and get yourself lined up for that tailwind....Sky King and Penny (woof) oh yeah still flying......
No I bought the best platform I have ever flown and I have flown C680s down through the turboprops and my last was a 58 Baron. I have a 2021 Aviat Husky. N40 AH....The AH stands for the factory name, my sister thinks it stands for something else!!! I had to learn stick and rudder again, having a blast. you can google and see it...best to everyone!!!
Yep, I was diagnosed in 2014 with a Gleason 9 and mets in my ribs, sternum, spine, pelvis and several nodes. Still here, still fighting enjoying my life. Click on my profile to see the treatments I’ve undergone if your interested.
My dad is Gleason 10 and he was diagnosed in 2015. Relatively speaking, his cancer hasn't been very aggressive or ambitious. He has a much more aggressive secondary cancer that is more troublesome.
I'm at 13 yrs and counting. Gleason 9 (4+5) and psa of 110 at start. Have taken a number of vacations from the meds during those years. Still metastatic castration sensitive.
Gleason 9- some 4+5, some cores 5+4- all 12 cores positive. Stage IV M1b began treatment 2/13. Just worked out for two hours weight training. The biology of our prostate cancers are all different. Just keep moving and focus on living well and meaningfully and probably stay away from outdated statistical literature. With newer and more accurate scans and so many new approaches in clinical trials on the horizon take care of your heart and mind and enjoy looking forward to maintaining a quality of life for years to come, with God’s grace!
The rate of change in treatment has been revolutionary vice evolutionary since I was diagnosed in 2014. While we may not be there yet, it may be that with the various treatment options we can live with PCa, much like AIDS and diabetes though people die from those too (A friend of mine passed recently from diabetes, he was diagnosed with it in 1978!).
I have a different approach now than when I was diagnosed. In 2014 my medical team and I thought long term in making decisions, 10-15 years. After that approach didn't work and resulted in my medical team recommending against treatments because there was no "long term data," I switched to an approach that says "will this work for the next 3-5 years...?" My reasoning was simple, if this has a reasonable chance of working in the next 3-5 years, by then the medical community will have brought newer treatments into play and I can avail myself of those.
9 1/2 years G9, metastatic to lymph nodes at diagnosis, still making plans. Changed thinking from dying from cancer to living with cancer somewhere about year 2.
Two reasons I participate in this forum for my DH-one to spread hope through what we’ve learned and two, to learn as much as possible and be encouraged. I hope your post has done both for you-it has surely encouraged us this morning.
You can relax a bit. There are plenty of us around. I was a Gleason 9, stage 2 when my prostate was removed in 2016. The cancer had not metastasized but did get to the margins. About six months later I had 42 radiation treatments to the prostate bed in my pelvic area.
My PSA is was checked every six months for the first five years and has always been undetectable. This past month my doc’s put me on yearly checks. I haven’t made any significant lifestyle or eating changes. However, there is plenty of evidence supporting wise food choices and exercise.
You will find there are many who have lived full lifespans in spite of the disease. Good Luck! 🙏✝️
Diagnosed over 4 years ago with Stage 3a, Gleason 9. Had RP about 6 months after diagnosis - one lymph node showed cancer activity. No treatment until PSA showed a rise about a year ago. Had Radiation treatment in May-June - PSA back to undetectable. I don't like working with time frames (as well have extensive study in medicine, almost became a Dr.). My oncologist last check up (last month) said, "let's throw out the charts, you're going to be here a while". My PET scan showed only 1 small spot in same area of lymph node removed. No spread, no growth and much attributed to exercise regularly with my dog and at gym - had revamped diet - and attitude. I don't dwell on time, treatments are evolving all the time. Just in the past 4 years the changes have advanced treatment. I can't change the past, I live today and tomorrow falls where it does.
Life is short and the journey not foreseeable for anyone, cancer or no. Most important is to do the things we came here to do. Fulfill our highest purpose. Do we know what that is? Can we follow the thread? If we are still here, then there is still something more for us to do or learn.
“A life well lived is long enough.” MB
PS: 921 million hours lived would be over 105 years!
Mw921000000, there are a lot of us. I was diagnosed at age 65, in 2014, with Stage 4 PC metastasized to the bone. My Gleason score was 5+4 (9) in the tumor and 4+3 (7) in the rest of my prostate.
Yesterday I poured concrete to repair a step, did two loads of laundry and mowed and edged the front yard. My total pain medication yesterday was two Tylenol every 8 hours.
Oh, and doctors can be very wrong: a real piece of work urologist at Moffitt Cancer Center in Tampa kept repeating to me, in 2015, "Well you know you have only 4 years to live!" Unfortunately I was alone and in too much pain from my diseased kidney to find another doctor and the ensuing "care" was horrible. Your father is lucky to have you on his side.
As you can read testimonies above. We are in a good position and much hope is at our grasp. We need to take care of ourselves with our body, mind and soul. Keeping in mind that you have as much hope.
Going on 6 years with Gleason 8
7 months on Drug vacation with an ultra low PSA 0.174 and feeling great!!! A new lease on life!!! Fight like your life depended on it with a joy in your heart knowing you have a very good chance to be with us who have given testimony.
It is getting close to 4.5 years since I was diagnosed stage 4, Gleason 9. Chemo and ADT kept my PSA low for years. I just recently added abiraterone after my PSA rose to 1.0. Bone mets are no longer visible on scans. I'm living a rich full life and have no plans to die anytime soon. Celebrate life.
I was a Gleason 8, with PSA 32 when first diagnosed. That was 7 years ago. Radiated and hormone therapy for 4 years, before a relapse. Went for a HIFU procedure in hope of a cure, but didn’t work out. Became metastatic, so radiation and Zolatax continued its suppression for two more years. 9 months ago, PSA went up again, so second time Oligometastic and newly hormone resistant. Radiation and now on Xtandi and quarterly Zoladex shots. with PSA dropping to 0.006. My 8th anniversary coming up and looks like I have time yet. So have faith and live on!
Thanks for starting this thread. I found many of the responses very encouraging.
Right after letting me know I had stage 4 cancer (distant mets in lungs), and I was at my most vulnerable point, my urologist told me that I only had 18-24 months to live. I had always been active and in pretty good health, and my parents come from two long-lived families, so I had always expected to live beyond 67. Now he was saying that I would be lucky to make it to 67. Needless to say his (premature and ill informed) death sentence was a shock.
Now, two years later (67th birthday this month), I'm still here and thriving. I get hit by SE's for a couple of weeks after my 4-month lupron/elligard injection, and again the last couple of weeks before the next shot. I've lost some strength, but continue to walk, lift weights and be otherwise active. My QOL is actually better than it was before diagnosis, and I'm working, planning and hoping to blow by that 5 year mark.
I know this is early but I was Gleason score of 10. PSA has been undetectable for about two years and six months. However, only the last six months were without treatment.
I had my six month checkup today since my "remission". All good but oncologist mentioned that testosterone had risen to 149. So, that is good news on most levels. However, it's also the threshold where it may start feeding the cancer cells.
I will enjoy the good report for three months and then keep my fingers crossed. I have history posted but FYI- I was on keytruda for two years.
I'll be entering my 6th year. Diagnosed Gleason 8, psa 34 with mets to the thoratic spine. Had SBRT to mets but they reappeared. PSA now .55 and on Zytiga. Had orchiectomy 2 yrs ago.
3.33 years post stage 4/Gleason 9 diagnosis...PSA undetectable 2 years now according to my last monthly test. I have done surgery, ADT and salvage radiation. I think anecdotal information can be reassuring, but I wish there were a source of hard data on survival tracking for the different categories. Is this being done? anyone have a source?
DX in December 2016, Gleason 8. My highest PSA reading was in Jan. 2017 at 21. Three small bone mets discovered in early 2017. RP on May 23, 2017. Lupron began in January 2017, Zytiga (with Prednisone) began in September 2017. Had 3 sessions of SBRT on the bone mets in March and June of 2017. About 40 sessions of IMRT to the pelvic bed ended at the end of November 2017. Lupron and Zytiga ended per the instructions of MSK and Hartford Healthcare physicians in June 2019. No further treatment of any type undertaken since June 2019. Each PSA blood test (drawn every 3 months from August 2017 to September 2022) has resulted in a score of <.02. I hope that some of my brothers and their caregivers benefit from my story.
I was "mis-Gleasoned" ..... my score at biopsy was 3+4=7, but somehow the biopsy missed large areas of grade 5 cancer, so I am actually a Gleason 9. It will be 6 years since my RP surgery this December. Currently failing second gen ADT drugs and working on getting LU177 through SPLASH trial
I read somewhere that number has significantly increased as the rolling survival rate increases as the result of improved treatments and treatment plans. Best of luck to everyone.
that data is the exact reason I wrote this post, but you can see most of these men who’ve responded are stage 4 with high Gleason and have survived passed that 5 year mark, some just high Gleason but most are also the final stage.
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Gleason 9 (5+4) 10+ years ago - widely metastatic cancer and running out of options!
Metastatic prostate to bones, bladder and liver. Stage 4 and Gleason score 10
How many of us with gleason 9+ have made 5 years +
