Question about OS statistics for stage 4 prostate cancer

The published overall survival statistics that I've read for 5 year survival are around 30% for metastatic prostate cancer that has spread to the bones. Since these statistics must be at least 5 years old, probably more like 7, I'm guessing that the patients in those statistics did not have second line ADT treatments Zytiga and Xtandi available to them. Just curious to know if someone has a guess as to what the new numbers would be with those second line drugs available or any other treatments that have become available since then. I would also appreciate it someone knows of any published literature on this subject and could point me to that. Thanks.

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  • Hi Gregg.

    I think this kind of question is very common for any cancer patient with a new diagnosis, but often highly variable when it comes to predicting many things to a high degree of certainty in regards to any specific Individual.

    Consider this document, which contains some data describing the ages and the fates of the men in 3 of the clinical trials that contributed to the FDA approval for Xtandi.

    (See Part 14, Clinical Studies)

    astellas.us/docs/us/12A005-...

    In Study 1 there were huge differences among Individuals in the range of ages, big splits between men with radiographic progression vs. PSA only progression, and 25% of the men who had received two prior chemos as opposed to just one. The Overall Survival (OS) improvement vs. placebo was around 5 months of added time, compared to the placebo arm, but, for Individuals in the trial, there could be much wider differences, particularly at the "tail end" of the curves.

    In Study 2 involving chemo-naïve men, there were similar differences among individuals in those similar categories, and a statistical OS improvement vs. placebo of around 2-3 months.

    One might be tempted to just "tack on" those extra months of OS due to the availability of Xtandi to the older survival statistics based on the historical Surveillance, Epidemiology, and End Results (SEER) Program data of the National Cancer Institute for Prostate Cancer that was diagnosed as Metastatic at first diagnosis, but the result might not be valid at all for a specific Individual who is living with his Individual prostate cancer today. Some of the men in the above trials were in their 40s at the start of the trial; some were over 90 years old. Some had huge numbers of bone mets; others had few or none. Some had visceral disease; some did not. Etc.

    These Individual differences, and all the Good Things that individuals and their doctors can do to help improve their Individual well being, quality of life, and disease progression, ... can often "swamp" the aggregate statistics, and provide some important Good Living within constraints, and very important Hope, to boot, for Individuals.

    Just some thoughts,

    (For better or worse, I suppose, considering that I started out with a PSA of 5,006 and bone mets galore! Ha. Ha. Ha(?))

    Charles

  • Thanks for the info Charles.

    As always, there is no simple answer. But we can at least get some idea from these studies.

  • Good answer, Charles. When were you diagnosed?

    The guys in the study wouldn't have had Provenge or Xofigo either, right?

    Gregg, you should largely disregard these stats, not just because they're out of date, but because you're in our group, & because you have the opportunity to take advantage of the new & old treatments in an optimal order for your circumstances, & there could well be more new treatments coming along, & finally, to complete this run-on sentence, because you are hopefully going to follow Charles's advice. The more you can minimize your stress hormones & maximize your pleasure hormones, the better you can fight the cancer. Even Western-medicine oncologists believe this. Relax! Smile!

    I don't remember off the top of my head when my first bone met was detected, but I know it was long before a PCa tumor caused a spinal cord compression in September 2011. I just finished almost 3 years on Zytiga. I'm scheduled for my Provenge treatments. Xtandi will be next. Xofigo would be after, or during if research shows a benefit to combining them. This month, a UCSF-trained urologic oncologist estimated that I'll survive 3-10 more years.

    This is after I was diagnosed with locally advanced PCa in 2003, & oncologists gave me as little as a year to live during the next few years. Doctors answer that question very conservatively, to say the least, so I learned over time not to believe them.

    Smile! Relax! Have fun! Ignore survival stats for a bunch of strangers. If they did a study of guys in our Health Unlocked forum, I believe the numbers would be far better.

    Neal

    P.S. Mark Scholz, the head of the Prostate Cancer Research Institute, says 2011 was the Dark Ages in PCa.

  • Thanks for your post. Here's the most important statistic: 100% of all people reading this are fully alive.

  • That's the spirit, Gregg!

  • Neal-S,

    I was diagnosed 3 1/2 years ago in Nov 2013 after being hospitalized in severe pain associated with an L-4 spinal met and also a very painful left iliac chain lymph node. CT, MRI, and NM Bone Scans lighted up like a Christmas Tree with 25-30 bone mets, and also numerous lymph nodes involvements. My PSA was 5,006. I went on ADT with Lupron and Zometa. PSA dropped to a nadir of 1.0. After about two years, resistance began to develop. Did a brief rechallenge with Casodex. Later did 2 out of 3 Provenges, Just past the 3 year point I started Xtandi. PSA dropped from about 95 to 3.4, so far, in the first five months on Xtandi.

    Charles

  • Ouch!

    You're fighting a good fight, Charles! The good news is you've had a good response to treatments, & are likely to respond well to further treatments.

    I don't know if you're too far away to consider this, but there's a great Advanced Prostate Cancer discussion group at the Cancer Support Center in Walnut Creek, which includes an extremely helpful medical oncologist in Seattle, via videoconference. There are some really smart, well informed guys in the group. If you're interested, I'll tell you more about the meeting schedule.

    Neal

  • Thanks for the Support Group info in Walnut Creek. I already regularly attend monthly Prostate Cancer Support Groups in Sacramento, Cameron Park, Roseville, and Yolo County, California ... plus another very helpful weekly Cancer Support Group near where I live, for advanced cancer patients and their caregivers, with various types of advanced cancer.

    I, too, am big on face-to-face Support Groups. Over the months and years you can learn a lot, share a lot, and, hopefully, give back a lot. The shared stories about diagnoses, procedures, side effects, and coping are invaluable. The participation of wives is great, too. A surprisingly large number of big Belly Laughs happen at some time during most meetings, too. It's not always just the serious stuff.

    Charles

  • OK! You are VERY well taken care of in the support group realm, & closer to your home than my group is. We also have some wives, & some good laughs!

    Neal

  • Is this Walnut Creek in California? We live close by and are looking for a support group.

  • Yes it is, Blair. The meetings are at 11 AM on Thursdays. 2nd & 4th Thursdays are medical issues, & they're excellent. 1st & 3rd Thursdays are the psychological & emotional issues. I haven't been yet but I imagine they're excellent too. The facilitator, if that's the right title, is a clinical psychologist.

    Just call the Cancer Support Center if you have any questions. They're very helpful. There's no charge for participating. Patients & spouses both welcome.

    Neal

  • I can attest to what Neal has posted about the value of those facilitated meetings that focus more on psychological & emotional issues. My Sweetie and I attend a facilitated weekly Cancer Support Group meeting that does both types of things. Very helpful for the newly diagnosed, particularly if already in an advanced Stage of cancer. Very helpful along the journey. Very helpful at the end of the journey. As I have witnessed in the approx. 3 years that we've been so lucky to have been in such a Group.

    Charles

  • BTW, the meeting at 11 is Advanced Prostate Cancer, & there's also one at 1 for Prostate Cancer.

  • Charles, that sounds like a good development so far!

  • Hi Neal and all.

    What you say is so important: to be positive and to never give up hope. Combining old and new treatments buys time, and during that time new treatments will be discovered... So there is lots of hope I think.

    Mel and Paul.

  • Hi Mel & Paul,

    Yes, there is. When I was getting those short survival estimates a decade ago & more, it didn't seem possible that anything new would get FDA-approved. But more recently, they just keep coming!

    As a well-known medical oncologist told me, "2011 was the Dark Ages!"

    Neal

  • This is my situation so purely anecdotal. I was diagnosed in early 2006 at age 54 with PSA of 16 and Gleason score 8. Prostate removed in 2006. Biopsy showed cancer had already spread to my seminal vesicles. Early in 2007, my PSA began rising. Had radiation during the Summer of 2007. Early in 2008, my PSA began rising again. I've been on Lupron continuously since then. On various bisphosphonates until I developed ONJ, which is an ongoing problem. Provenge in early 2013. Started Zytiga in July 2015. It continues to work. I'm now 66 and continue working, which I enjoy. I get tired but that's been the case for years.

  • Bill, I loved my work, but I was advised to retire in 2005 for the reasons I discussed above, & because we didn't know if I'd be able to have ANY healthy retirement time if I didn't retire. This DOES assume that you know HOW to enjoy yourself in ways other than working. (Depending on your field, you may be able to have some low-stress involvement after you retire, as I do.)

    I think it was wonderful, life-extending advice. I retired at 64, after planning to work until I was 70. We welcomed our 4th grandchild to the family this month. The others will soon be 13, 11 & 7. We've hugely enjoyed travel. And so on.

    Neal

  • I'm happy for you. I should develop hobbies and try to become more well-rounded.

  • Thanks, Bill. Follow up on what appeals to you. Do you have interests in music, sports, photography, crafts, food, travel, drama, comedy, politics or anything else? If you don't mind, I'd like to know what comes to your mind.

    Neal

  • Most of my spare time is taken up with family and close friends. My brother and I own 2 community banks and have other joint investments. He's an attorney and lives in Wichita, about an hour away. I look after the banks. We've got excellent senior management so my attention is focused on the bigger issues (strategic planning, sr. mgt. succession, board relations, etc.). For example, I'm currently heavily involved in negotiations to sell our bank, which is 280 miles away. We'd then reinvest the net proceeds within our close by bank's footprint or expand its footprint.

  • Enjoying your family & friends is truly worthwhile. I'm going to be very honest & hope I don't bruise your feelings. The rest of what you discussed is about work, money, & no doubt a certain amount of headaches. It's one thing if you're fatigued from cancer treatments, & people talk on this site about exercise & supplements that can help with that. It's another thing if you're tired because there's too much work & too little rest & fun in your life for a guy fighting advanced PCa.

    I was advised over a decade ago to get at least 8 hours sleep a night as part of my cancer fight. I do that on most days. On any day that I can, I don't set an alarm. I feel the best, & the least tired, if I get all the sleep my body needs at this point. If I were still working to the extent that I think you are, I couldn't do that. I almost never did it before I retired.

    The other thing I want to say is that you didn't name anything in the way of interests. Is there anything that comes to mind that might allow you to add more fun to your life? Just to throw a few things out, I had no idea how much I could enjoy photography until I took a class decades ago, & then being able to photoedit my own digital photos added even more fun in modern times. In retirement, I have more time to see live music & watch basketball, etc., on TV. We travel. I'd like to catch up on some good movies & TV shows.

    Don't feel that you need to become more well-rounded to become a better person or something like that. Please DO think about whether there are ways to add FUN to your life. Again, if you don't mind, please let me know if you come up with any ideas.

    The idea here is to have less stress & more fun (& rest) so you can live longer, more comfortably & with more enjoyment!

    Neal

  • Yes, I'm seriously involved with the Kansas University Endowment Association. I'm a member of the Executive Committee and chair the Governance Committee and also our local community college Foundation board.

  • You have a lot to be proud of. I've cut WAY back on my board & committee work, especially as it became stressful or cut into my ability to get all the sleep I want & need. Let's face it: your volunteer work, as good as it is, IS another form of work

    You don't seem to have a sense of the value recreational, entertainment or hobby interests could provide. And maybe that's just not in the cards for you. I just wanted to see if you had the idea that it might be.

  • Thanks, I appreciate your experience and perspective.

  • I know it's natural to wonder about such things, but I do believe it's best for us to just live each day fully and if we want to gauge how much time we have to do the things we want to do, why not use your own body and mind to inform yourself. If we are pain free and functioning well, we likely have enough time to do those important things. But if we notice we are progressively losing capabilities, it's probably time to have some sense of urgency in pursuing our unrealized dreams. We are not statistics. We are individuals. Good luck!

  • Well said

  • Thanks. I really have learned to listen to my body and it has told me quite a few things. Just about everything my doctors have told me, my body told me first.

  • I've been on Aberaterone for nearly 6 years. My PSA is still 0.1. It was >600 at diagnosis. 7 mets, skull, shoulder, two ribs, pelvis and both femurs.

    I still work a little in a sedentary job, I am pretty much pain free and feel extremely well.

    I was told 3 - 5 years, (but an undisclosed estimate of 6 months according to my doctor) before I started Aberaterone.

    I believe the results of arm G of the Stampede trial in the U.K. are about to be released, and my Oncologist intimated that they were very good.

  • You're doing great, Tommy!

    You reminded me that last month, I found a 1-3 year estimate in my chart from a year ago. Balderdash!

    Neal

  • Obviously we hear from the guys who have survived much longer than " average" because they're still around to talk about it! The stories of guys who pass early are virtually never told. We just have to do everything we can to not be a statistic and hope it works.

    I was told 2 years ago that if I followed the standard of care I'd be dead in 5 years when I had biochemical recurrence after SRT. Maybe the jerk was right but I then had had imrt to all pelvic lymph nodes and they've been clear since. I now have a met on right femur which I'll zap with SBRT and ADT. Keep on truckin'!

    Bob

  • Bob, don't forget that many of the guys who passed on early didn't take good care of themselves, were depressed (& perhaps isolated), &/or didn't have good medical care. The jerk was NOT right, & you're already proving it. And YOU'RE right: Keep on truckin'!

  • Gregg,

    Statistics tell one about the group as a whole. If 5-year survival has now risen to 40% or 50%, the group experience is still grim.

    Samuel Johnson said: "... when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”

    & that is the value of a dismal statistic IMO. At least if it causes a man to become active in his own treatment.

    Group statistics can't help the individual who wants to know how his survival will be affected by:

    - 2,000 mg/d Metformin, &

    - albumin >4.4, &

    - D-dimer ~0, &

    - vitamin D > 50 ng/mL, &

    - tryglycerides ~ HDL-cholesterol, &

    - statin user, &

    etc.

    etc.

    etc.

    My aim is to become a group outlier. A secondary aim is to help increase the number of outliers.

    -Patrick

  • Patrick, you're doing a wonderful job of accomplishing your aims! I'm very grateful, & I have no doubt that many others are, too.

    Neal

  • I completely agree with living each day to the fullest as has been said. Having this diagnosis has helped me to learn this even more. If you read my posts, you'll see I've written quite a bit about that. But as Charles has said, this is the kind of question the newly diagnosed often ask. I am still very new to this. I'll just be honest: the idea of dying is something new for me and I still have to get used to it. I know, it shouldn't be that way. I know, I should have known already, etc. etc. But I'm not alone in this at all. We all "know", but some of us still block it out and live an illusory world as long as we can. Once the bubble is popped and we "get real", life can become more meaningful as it has for me. But now there is "the knowledge" to deal with.

    It is difficult to handle this new knowledge and I am still curious about many things. But I'm learning that I can't think about the future, except for purposes of basic planning. The future doesn't really exist, only the moment we live in now exists. Occasionally I backslide and start worrying about what will happen down the road as I'm sure we all do. It's hard to completely avoid this, but we all do our best to minimize it. Whenever I do, I picture Doc Brown from Back to the Future in my head running around and getting all upset. He says to Marty: "It's information about the future isn't it! I warned you about this kid! The consequences could be disastrous." And then "Whatever you've got to tell me, I'll find out over the natural course of time."

  • Three years on Lupron 45 days of imrt now 65 years old retired but will give my all in my life as I substitute in public school three days out of the week and build projects in my shop. I will not stop I will push myself to the limits until I can no longer move myself. The ones I touch will remember me for who I am and what I've done.

  • Just be sure to keep a balance in your life. Helping kids is also what my career was dedicated to. But don't force yourself to the point that you kill yourself. If you're experiencing more stress than pleasure from working, allow yourself to believe that you've accomplished a lot for kids but are entitled to keep on living & enjoying the other parts of your life.

    Neal

  • This is a wonderful description, Gregg! It certainly takes me back to the thoughts I had starting with my diagnosis in 2003, followed by a failed RP in 2003 & failed EBRP in 2004. What you've already learned will continue to provide great value to you, even though the worries will not be completely banished all of the time. Based on my parents' longevity, I expected to live into my 90s. Then came the experiences I listed above, at ages 61 & 62, which seemed to predict death in my 60s.

    So a huge sense of loss has been replaced by a great appreciation of what's actually happening. I'm enjoying life a whole lot at 75, an age that had appeared well beyond the possibility of reaching, let alone with more years to enjoy ahead of me. I believe you have a lot of NOT dying ahead of you, & that it will be very meaningful & enjoyable because you're increasingly able to make it that way! Keep on keepin' on!

    Neal

  • I think we just have to focus on living life to the fullest and stop thinking about how long this good thing will last. It will last as long as it will so let's just squeeze every drop out of it we can.

  • Exactly!

  • I just want to quote mark twain as he states 3 stages of stretching the truth ,each one less true than the previous " Lies , Damn Lies ,and Statistics " please google Jay Gould the median is not the message. For an explanation of cancer statistics.

    Dan dx2006 stage 4 metastatic disease to bone and lymph psa 148, gleason10, age 49

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