I wonder what people's thoughts are regarding a revision or more 'up to date' figures for overall survival prognosis for advanced prostate cancer.
I imagine we're all familiar with the often stated figures of only 30% of men with advanced pc will survive 5 years or that median life expectancy is generally 3-5 years, however I wonder given the recent developments in treatment - not least the change in the standard of care to introduce early docetaxel and/or abiraterone - perhaps there should be a revision or revisiting of these particular statistics? Not least a consideration of how 'old' the cases are that make up the data for these statistics. I appreciate that not enough time has elapsed or studies undertaken to 'officially' amend these but I wondered what the consensus was among users here and whether anyone had had any informal discussions with doctors/oncologists/researchers/fellow patients on this question. Even if it is just informal or anecdotal.
To note - I know that every case is different and that no individual is a statistic and should not therefore be treated like one. This is just to foster a discussion on a general point about the development of treatment.
All best wishes and thoughts to you all
J
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Only God in Heaven knows when I am going to die. I don"t believe in these statistics, and I have a Ph.D. in advanced statistics and research design. Initially when I was diagnosed with prostate cancer, not advanced at that time, the doctor said she was going to work to get me 5 years, and that was 19 years ago.
I last asked my prognosis in early 2014, and I've resolved never to ask again. Those who go to appointments with me (usually my husband or my mother) may ask--I don't put any restrictions on their questions.
As to the string question, yes, I think consideration needs to be given to revising the numbers. Until there's solid information, that probably needs to be something like, "3-5 years, though those statistics are based upon historical treatment protocols, and the period seems to be getting longer."
I agree with Rich, Cancer statistics can be very misleading, especially if not trained in Statistics. Mark Twain in a reference to statistics said “ There are 3 levels of Mendacity each one more misleading than the previous , Lies, Damn Lies, and Statistics” I only asked one time and that was on Diagnosis 11.5 years ago, they told me one year, and I never asked again. Only God knows. But certainly with all the new treatments, The old statistics are outdated.
We are gonna get that 5-year survival percent up with our group
MedOnc told me in 01/15 that I was Dx'd at the right time that the CHAARTED study came out and we started ADT(Lupron/Casodex) and did 6 Taxotere sessions and PSA was still in teens -from 840. MedOnc spoke to tumor board and no one would agree to more. MedOnc told me he would continue chemo until I said to stop or the PSA plateaued. I did 9 more and with exercise, supplements and dietary change - PSA has been 0.1 for the last three months
Let's get them some great data from our group :-)!
The statistics tell us something important about the group we are in, but nothing at all about our own mortality. More accurate statistics would not help in that regard.
If you want to look at something useful, get a basic blood profile & go to the inflammatory markers. They will tell you something useful, because a poor inflammation status can always be improved.
If albumin is 4.0 or less, there will be a profound effect on survival if it is not brought up to 4.5 or greater - IMO.
See my series:
"Inflammation. [1] Neutrophil-to-Lymphocyte Ratio [NLR]"
"Inflammation. [2] Albumin & C-Reactive Protein [CRP]"
Also, one can monitor coagulation factors & use nattokinase to correct them.
& Triglycerides too. Are yours closer to 50, 100 or 150? What is your triglycerides:HDL-C ratio? Can usually be improved.
Mundane stuff, but one can always jockey for a better spot on the bell curve.
-Patrick
The number freaks are always coming up with something new. The latest one I read concerning my situation tells me I have at least 75 months and counting. I'm not going to agonize over this level and that number, whats the use? When the last sunset gives me that final jolt, so be. I refuse to become a number freak follower and stress over some damn thing that is either high or low. So this is what they tell me without all the mumble jumble. ascopubs.org/doi/full/10.12...
Sometimes I hate these statistics. For me, the statistics for my rare Ductal Cancer that had spread, I have about two years left. Yet I am getting ready for a SCUBA trip and I just got done riding 1000 miles on my bike for the year.
I fall back on the “statistic” that my wife and I have. When we are in our mid 90’s , which is over 30 years from now, we will go SCUBA diving one time and just not come up.
As a fellow Ductal that has spread I understand dislike of statistics. They never apply to us. However, for me I am trying to gauge odds of making it 3 more years and where will I live?
Every stat I read about us says we are looking at less than 3% chance of getting to five years after dx.
Have you ever read better than that? I'm still looking.
By the way, I am planning on a 3 month road trip leaving on my 5th anniversary of my dx.
Yes, of course the median-survival statistics should be updated, and each revision should explicitly mention all raw data sources upon which it is based so that future revisions can become more accurate.
Secondly:
For peple who understand and enjoy numbers, they can be quite helpful Although no statistic can tell me about my individual case, they can tell me how to bet. Numbers provide me a better idea of the odds. This helps me decide whether to take Social Social earlier or later, how many years my retirement funds are likely to last, whether my estate will be more helpful to my grandchildren or to my as-yet-unborn great-grandchildren, and so forth.
Thirdly:
It isn't (or shouldn't be) hard to understand the median. The median is the value in the middle: half the values are less, and half the values are more. It does NOT tell you anything about the overall shape of the curve.
Here's why the shape of the curve matters:
• In a dataset like {2, 3, 5, 6, 8, 96, 240, 360) months, the median is 8 months. If your case falls on this curve, then once you make it past 12 months, you're doing great, and can reasonably expect 96 months or more.
• In a dataset like {6, 7, 7, 7, 8, 9, 9, 9, 9} months, the median is also 8 months. If your case falls on this curve, then even if you make it to 9 months (as nearly half will), it's wise not to set your heart on 15 or even 12 months altogether.
Stephen Jay Gould wrote one of the best articles I've ever read for interpreting "the median" when it comes to one's own cancer. The two most salient passages in the article are these:
(1) "When I learned about the eight-month median, my first intellectual reaction was: fine, half the
people will live longer; now what are my chances of being in that half?"
(2) "But the upper (or right) half can extend out for years and years, even if nobody ultimately
survives. The distribution must be right skewed, and I needed to know how long the extended tail ran—for I had already concluded that my favorable profile made me a good candidate for that part of the curve."
It's a good article. One thing he doesn't point out, however, is that for a "right-skewed distribution" (more like Poisson than Gaussian), the most probable occurrence, called the statistical mode, is actually SMALLER than the median. But we all strive to be in the long upper tail. My favorite part of his essay has to do with the role of mental attitude in putting us there:
"A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. "A sanguine personality," he replied."
Amen.
I think the overall survival stats need to be updated, but with rapidly improving treatments, they will always be old relative to the newest treatments that extend life today. So any statistics you read, will be telling you about the past to a certain degree.
The ones you see now, give someone with stage 4 metastatic prostate cancer around a 30% chance of living 5 years. But those don't fully take into account those who have a good response from second line ADT drugs such as Xtandi. Second line ADT drugs were just becoming available 5 years ago. And even more recent advances where upfront chemo and Zytiga have been used won't effect statistics for another 5 years.
Survival statistics are useful to give a general idea of how much more time you have. I think a lot of us are learning not to focus on the future that much.
The statistic I care about most is my chances of being alive right now, and that's 100%.
> a lot of us are learning not to focus on the future that much.
I think there are important nuances here, in my experience. Shortly after I was diagnosed, I did expend lots of time and energy when I could hardly help myself from having heavy fears and dreads about the future. The awake at 3:00 AM kind of stuff. My death, the possibilities of serious bone met complications, imagined scenarios about how I might be in pain, and what might happen during my last months and weeks and days before I died, etc. (That speculative, anxiety creating future does not yet exist. What actually happens may or may not be anything like it. For most of my life, the next hour is quite likely to be like the current hour, and tomorrow is more likely to be much like it is today.)
That was different from intentionally and purposefully "thinking" about the future, without so much of that fear or dread. I could choose to do some reassuring estate planning. I could prioritize the times and likelihoods of better communications with my extended friends and family members. I could fine-tune how I wanted to draw down some of my retirement or other financial assets. I could plan and make happen some experiences that I had perhaps put off too long, or that I could be constrained out of sometime later. I could do things to make this transitional time in my life and my eventual death less burdensome for my spouse and survivors. I could stop sweating so much of the small stuff, and clear a lot of life clutter, do some more forgiving, and hugging, and expressing gratitude, etc.
I thinking planning for the future is different than worrying about the future. Worrying is only useful if it produces something productive. It's right to worry about how your heirs will handle your estate if you don't have a will. If that worry leads to writing a will, it's productive. But after that, the same worry is useless.
A lot of things you are mentioning such as estate planning, retirement planning, communicating with your loved ones, doing the things that important to you in life. etc. are things everyone should be doing regardless of their "prognosis". A lot of people never get the early warning that we have gotten so putting this off is risky for anyone. I started doing these things quite some time before my diagnosis. I will say there is a new urgency now, but priorities haven't changed regarding planning and living life to the fullest.
The best thing you can do for the future you don't have is to live your life fully in the present.
I think that focusing on statistics is a fools errand. All we can do is treat our disease as aggressively as possible, hope for the best , plan for the end and live for today.
I respectfully disagree with the first half of what you wrote.
If we ignore that statistics that tell us the distribution of outcomes in others with our type of disease, "treating our disease as aggressively as possible" can lead to lives unnecesarily shortnened and diminished by overaggressive treatment.
It may be a personal choice, but I prefer informed hope over uninformed hope.
I agree that statistics have value. We just need to be careful how we interpret them. They give us a general idea of what to expect, but not much more than that because of the variations for each individual.
With stage 4 prostate cancer, it's more likely than not that I will die sometime within the next 10 years. That's a fairly non-specific conclusion, but a reasonable one that still has value.
I think that oncologists need to be less eager to give us worst case stats, my oncologist casually told me and my wife I had a year - 5 years, this resulted in me leaving and having to lean against a wall outside the hospital while I hyperventilated then I marched back in and said I'm not prepared to take that so you'd better get to work!! I learnt my lesson that day I will never ask again. I have met men who have lived 10 years past their given timescale and one guy on an oncologist visit sat next to me has been here 16 years with Gleason 9 multiple mets, chatting to him was inspirational! Positive mental attitude combined with much study on prostate cancer so we can understand and tailor make treatments is the way forward. My wife and I own a large business and the day of my diagnosis she put 5 girls on research duty they found the best doctors in the UK and contacted them all, one she wrote to everyday for a month until he left his research lab to speak to us!!! Stats have a place but when you understand the patterns of prostate cancer you are already able to gauge where you are and how your doing. The stampede trial for ZYtiga for instance still have men who are alive and well with undetectable PSA so a reevaluation of numbers should happen soon. This site has taught me more than every consultation I've ever had with my oncologist. Thank you to every person who posts on here and proves the outdated stats are beatable. I'm never going to focus on timescales again but if I could give advice to oncologists I would say to a patient asking - everyone is different you have a condition which cannot be cured at the moment but who knows with new progressions in treatment however many men live for many many years and I am going to work to get you as long as possible. This answer would have been preferable to me!
In a Jackie Gleason HONEYMOONERS tv show skit, Ralph thinks he is very sick because his doctor mistakenly sent him a note indicating that he may be dying soon. His sidekick Ed Norton then says: "Oh, what do those doctors know anyway - they can be wrong sometimes. I had a friend Freddie Kruger, and his doctor told HIM he had only 6 months to live. Boy oh boy were those doctors wrong." So Ralph says, hopefully "What happened - how did he do?" And Norton answers "He made it to almost 8 months!"
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