A study by researchers in Denmark investigated the effect that bone metastasis had on survival rates for men with prostate cancer.
The results are below:
Advanced prostate cancer One-year survival Five-year survival
Without bone metastasis 87 percent 56 percent
With bone metastasis 47 percent 3 percent
With bone metastasis and skeletal-related events
40 percent less than 1 percent
I know not to always believe what is on the internet, and there are multiple factors that ultimately affect survival, but 3% survival after five years freaks me out! I sure hope I am in that 3% group.
So far, 1 year into my diagnosis of bone metastasis, 12 out of 16 cores positive, Gleason 10 and BRCA2 +. Have had robotic prostatectomy in November 2018; clear margins, 2 lymph nodes out of 27 positive, seminal vesicle intrusion. Was on Zytiga/Prednisone for 6 months before it failed. Had Provenge immunotherapy treatment in March 2019. Continuing on Lupron/Eligard. Now on Olaparib, PARP inhibitor. Latest PSA <0.01. I am trying my best to keep ahead of this disease, and will continue to research all viable options. I plan on beating the odds that are stacked against me.
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HopingForTheBest1
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Internet is rampant with old,outdated studies..the purpose is to scare you to death and sell you very expensive stuff. Data has changed in last 5 -7 years but for some reason they keep on putting old data.
You've already made it to one year, which means you've already beaten the 47% odds in this outdated study. Now let's look at that 3% five year survival. Half of the 97% that didn't live five years were dead in the first year. If you take them out, then the five year survival goes up to roughly 6% for those that made it past the first year. If you make it to 4 years and 364 days, I can virtually guarantee you'll make it to the five year mark.
Zytiga wasn't approved when this study came out. Oliparib looks to have been approved 5 years ago. Docetaxel was 2004, so somewhere in the middle of that study. These are significant advantages that weren't available 20 years ago.
Don't freak out, it will kill you You have undetectable PSA due to a recently approved drug. You can be that guy they write newspaper stories about who have miraculous responses to new drugs.
Full disclosure: I was diagnosed with bone mets and had radiation to my spine, which according to that study gives me a 1% chance at five years. I'm not buying that. My hobby is discrediting such studies.
Reading all this, I’m much like Tom...just two years later. So, I’m more than 2.5 years in this.
I’m an eternal optimist and realist trying to manage expectations because of “old” data and the truly emergent data for the growing use of Zytiga and xtandi while still being very responsive to hormone deprivation.
Will I make it seven more years to be 60 years old? I have no idea. I hope so, though, and I’m treating my body and soul, accordingly. That will be some birthday party!
Will the 1% survival be remotely accurate by then? No, since it’s already off fortunately.
Am I scared about the day when/if my cancer is resistant to hormone deprivation? Yes, I admit it and am inspired by many of you. And I’ll be ready.
I love how we all plug along together and do what we can to live life to the fullest! I’m grateful to all of you.
Thank you very much!! My father has G-9 bone mets and when I started to read statistics I could not stop crying. But do I understand it correctly that if he survives the first year the odds go up for longer survival?
Yes, that's my understanding. Those who die shortly after diagnosis generally didn't respond to treatment, weren't strong enough for treatment, etc. On the other hand, a good response to treatment can prolong life for many months if not years, and there's rare cases where remissions last for over a decade.
We're also living in a time where new treatments are being developed at a rapid rate, and there are members here who have been surfing (for lack of a better term) from one new treatment to another for over a decade.
I think it's very good that you are already trying the Olaparib PARP inhibitor after finding that your genetics are BRCA2 positive. Always remember that each of us is a statistic of 1. Even if a median Overall Survival in special cases might be somewhat shorter, 1/2 will beat a median OS time, and "somebody" has to be way out on the "tail end" of the survival curve.
This is why you don't look at research from 15-20 years ago. That's basically the survival statistic for people in 5000BC in regards to current cancer therapy. They are taking into account people before zytiga, xtandi, docetaxel, cab, lu 177, provenge... etc. This data would be considered ancient when it comes to the current reality of being diagnosed. It's hard to say what the current 5 year survival rate is, but recent studies indicate that the 3 year survival rate is anywhere between 65-70 percent for high volume disease.
Most of those men didn't have docetaxel and they most certainly didn't have zytiga or xtandi. Docetaxel and zytiga upfront have only been SOC for the last few years.
Survival data comes from published studies. The best way to avoid the internet misinformation that some seem concerned about, is to go to the original study paper [1]. The first thing to note is the publication date of July 2010! The data collection period was from 1999 to 2007.
By the time that a study is published, the data is usually at least several years old.
However, it is misleading to suggest that things are so much better today. What percentage of men with mPCa survive 10 years?
Statistics say much about the group, but not the individual. There are a number of things that might improve one's place on the bell curve. Dismal stats should motivate one to take control.
You're right. Guess it's just upsetting because I want it to be longer and my dad is already at 9 months, so it's upsetting. You're right though, it isn't a huge leap in the last decade.
This is why I continue to look for scientific papers that point to the potential benefit of off-label drugs, supplements & lifestyle changes. We can't wait for the clinical trial that will give men a better than 50% chance of 10+ years.
This study is insightful, suggesting a marginal improvement over a decade up until 2014. It is, however, unlikely to include the current SOC (Abi/Enz/Doc plus ADT). For more recent survival statistics, we can just look at the latest survival numbers from STAMPEDE and LATITUDE trials. For "high volume" disease the median OS was about 50months, and for "low volume" median not reached after 65months (or so). What is also interesting is that the slop of OS for both cohort is flattening (as of this report), and for the "high volume" disease, there's north of 40% overall survival at 68th month. So these are just the most recent recent facts with the latest SOC.
Also, much like regular Life Expectancy in general population, the longer you live, the longer your life expectancy. In this case, the longer a person responds well to a treatment, the longer the OS. It may sound trivial, but it does matter for patients. For a newly diagnosed patient, vs a patient 3years into the treatment with no progression on a similar SOC, they share the same expected OS at diagnosis, but the OS for the latter is expected to be longer.
Second, keep in mind these studies published OS, not cancer specific survival rates. Although for lower grade PCa they may be similar, but for higher grades OS is substantially LOWER (your study shows that as well). By how much? I'm not sure, but I have seen 15-20% range.
Lastly, I second yours and other's comment regarding adding supplements intelligently. But at the end of the day, it is the unknown unknown part of the disease that determines the course.
I was pretty convinced I was that 47% not making 12 months, Stage 4, Gleason 9 and very high PSA 1386 and Mets to every bone in Skeleton and in LOT of pain.
My MO really turned it around for me, pain Doctors have really helped in last couple of weeks. Still some days are harder than others but I just spent the whole weekend doing my Archery sport, in Feb I couldn't shoot 20 arrows from a 30# bow, this weekend I shot 250 arrows from 37# bow (still low weight for serious level). What a GREAT feeling to be able to have some small qualities in life to make me feel almost normal again. Summer of 2017 I took 3rd in world WA3D champs, Archery is my life, that and my family keep me fighting this beast.
Barebow Stringwalking, Stolid Bull Vanquish. It's VERY competitive in Europe, Swedes are really good with this style. Recent rule changes have allowed USA to grow and has become even more fun. I won Worlds-Euros 4 times as well.
Ctarleton gave you good notice, very low PSA < 0.01, that means undetectable, is incredible! I would like to pay your attention that Olaparib is a kind of targeted therapy that do not let that cancerous cells repair their DNA and die. Many people can not tolerate this medicine, you are so lucky, enjoy your life!
Very sobering for sure. I had a diagnosis of bone metastasis, then radiation treatment and now a diagnosis of never having bone metastasis. I am told it was a mistake. I cannot convey to you the feeling of being sure of the course I was on, regardless of the outlook of survival and finding out my radiation oncologist no longer believes that to be true.
I do not wish this disease on anyone but it has forced me to find clarity. This is better than being in the middle of the ocean clinging on to the remnants of debris of my thoughts and fears at sea with no land in sight, not home, not hell nor heaven. That is how I felt afte finding out.
I am learning the lessen of the "now" and the "knowing" (coined by Wayne Dyer - a writer worth reading). I must focus on the now and knowing that this life is perfect, as it is. We don't know how well treatments will work, or if the path we choose is the best path to take when we use our minds and our emotions. I believe that meditation and focus provides clarity and joy in the moment, whatever it may be and helps us in our decisions and regaining control of our health.
Fear, second-guessing and reading statistics can derail us from being here and now. If we allow it, It can take the time we have left and consume us with the darkness of our thoughts and fears. Know your treatment options and stay on top of the information out there but don't let it steal the time you have, however long it is. I want to die after I have seen all the wonderful places that I have dreamed of and I plan to do so, one way or another.
I wish you calm, focus, joy and clarity. Good health lives there.
The biggest problem with Axumin scans are that they are very easy to misread for those who don't do it constantly. So, you get the scan, they give you a radiologist's report that tells you where the uptake is of the injection medium that suggests a tumor. They also tell you whether they believe it is a true positive result that should be followed up. Mine indicated that I had a lesion on my left femur and a tumor near my bladder.
I had a follow-up MRI for the bone lesion and it was initially reviewed by a few radiologists, who seemed unable to arrive at a conclusive diagnosis. My MO then went to a much more experienced radiologist in reading borderline MRI's for bone lesions and concluded that it was a lesion.
I was referred to a major Portland hospital and a treatment plan was agreed upon, where upon another MRI was done but only to locate precisely the spot to be treated. It was a few weeks after this that the radiologists there informed the RO that they did not believe it was a lesion. They had not initially studied the MRI that was sent over, instead worked under the assumption it was correctly diagnosed. For whatever reason it came up again later. Without a lawsuit, you never get the complete story. It comes down to a weak link anywhere along the way can skew the results.
My opinion is that it was a lesion, as it did get better after treatment and my original MO agrees. So, I got them to change their protocols to ensure this doesn't happen to others. I am a professional in a different field and I understand that experienced and knowledgeable people sometimes get it wrong, especially with new technology. It is something everyone should take note of for themselves to be sure the diagnosis has been confirmed by more than one radiologist.
Thank you for your answer! My father had two bone mets accourding to PSMA, I’m now trying to understand how often he should have the scans taken. Also: should he have additional MRI? Thank you again.
I assume as is not stated, that the the more optimistic statistics apply to those who are not yet chemo or hormone resistant.
Therefore for those who are both, comments suggesting that current technologies are going to present a more optimistic prognosis as a result of the more recent medical are for the most part meaningless,,,,except possible for slight extensions possibly from a Provenge or other immune therapies, the rare parp inhibitors or the as yet unapproved anywhere LU therapies or possibly a very short time Xofigo.
So in general the quoted extended optimistic statistics only apply to those who may still respond to ADT or chemo in their various guises.
Three "quacks" told me that they would perform RP on me when I was metastatic.
These so-called highly qualified surgeons (all studied and worked in the US) would have screwed me badly (physically and financially) had I agreed to get operated on.
Always get second, maybe third or fourth opinions. Doctors can be self motivated or just plain ignorant.
For you, robotic surgery was the correct treatment, without a doubt.
But, the fact that your PSA started rising (however slowly) shows that the cancer was either not removed altogether or had already spread elsewhere.
As far as I am concerned, I was living the dream before "metastatic prostate cancer" hit me (was detected) about 18 months back. After that its been treatment after treatment after treatment. Hardly living a dream. My life was far more enjoyable before cancer. Facts are facts.
Cheers and all the very best to you.
Some good advice here!
Which begs the question - WHERE are the later survival rates? We cannot use drug company trials as these are too narrow. If you Google "survival rates for prostate cancer uk" you will see numbers that will cheer us all up - they are looking at OVER 90% for 5-years survival! These numbers also give the different survival rates for different age groups.
Is there something you can attribute to your long term success? It is hard for me right now to look 5 years in to my future, as I feel the deck is stacked against me.
After I got the phone call, "You have Stage IV prostate cancer and the reason you fractured your back was because of the cancer" the Danish report is what I came up with when I googled survival. Believe the one I saw stated 33% one year survival for my situation. A few days later, the oncologist was more optimistic, one and a half years, maybe two and a half years if I did chemo. After about two months of chemo as she passed my chair she casually remarked "you are going to live many years." And walked away. I am now almost one month away from that two and a half year expiration date. I am walking and talking. I have the side effects I've earned along the way. A small price to pay. I have a stable T-12 50% spinal cord compression, mets seem to be stable, no new mets. Ever growing list of potential issues because I am 69 years old. Next month will be 2 years on Xtandi, 0.1 psa for many months now. One day at a time. Good luck to everyone. I wish you well.
Thank you.My hopes are bouyed (sometimes dashed)when I read all your replies.To Hoping For The Best 1 ,you seem to be on the right track.Lets be thankful for each day given us.I wish you well.
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I an Dennis I have Stage 4 prostate with bone metastasis. Diagnosis in 2011
Bone metastasis good news: OsteoDex got to phase 3 at last
For those with bone metastasis: what are (were) your ALP numbers or bone-ALP?
