Cancer, mortality and some notes on Sanders

Cancer,  mortality and a little new watch stuff

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Cancer: as sent to family but with most names removed:

Good afternoon, folks!

... has urged me to send you all information on my prostate condition. Her position is that silence produces more worry and speculation than full disclosure. For myself, I hate to live in a world of total secrecy on absolutely everything... so OK, I'll do it. The technical details may be more than you want to hear, but with email you can just ignore them. A quick summary: when my urologist called me two days ago, he said: "Don't worry, you have many years of life yet, and I will be with you the whole way."

I did discuss this with Luda. I have to say --- the conflicting feelings about how much I should say are far more upsetting to me than the condition itself! I have been pretty much objective here, and not at all perturbed. I am much more perturbed by indications of the entire human race going extinct, almost certainly after my own death, and I have never expected to live forever in any case. I will try to give an objective account -- which reflects exactly what I have been thinking about this.

Since prostate cancer is... something like the second largest killer of males (or second largest cancer killer? it's all on the web)... and since there is some analogy between those issues and issues of mastectomy... it is not a total waste of time to understand it better.

Above all, prostate cancer has been the number one poster child in the US for excess medical spending and intervention which was not really needed. I was well aware of that when this started.

How did it start for me?

My doctor includes annual blood tests as part of the normal annual checkup routine. One of the many things they test for is PSA count, "prostate specific antigen." Despite the name, I am not so sure exactly how specific it is. That's one of the things I haven't read up on as much as I might. 

About six months ago, my PSA count was 8.5, with some noise about the "free fraction." My GP urged me to see a urologist to follow up.

I delayed quite a bit, because I had many other things on my plate (including a colonoscopy and cataract surgery, as well as a few papers to get out). But eventually a colleague from NSF urged me not to postpone too much, and Luda located a couple of urologists who take GEHA in our area with excellent reviews. Dr. X prescribed a repeat PSA test, to be sure that the first was not a fluke. When it gave similar results, he asked me to come in for a standard twelve-point biopsy, which happened on December 22. Results usually come in in one week from such biopsies, but because of the holidays there was no data (e.g. nothing on the online system) until he called two days ago. Maybe they like to call first before posting this kind of data.

Dr. X said, roughly: "Don’t worry, there is no rush, but we really should schedule a consultation to discuss what happens next. We did find cancer, in 6 of the twelve samples. The Gleason score is 3+3."

By the way, prior to the biopsy, he showed me a statistical table showing that for people my age with my PSA results the probability of finding cancer is 56%. The findings in my case were precisely at the median of what one would expect from the biopsy. The biopsy itself was really no problem. I did not know what to expect before the doctor came into the room, except that the medical assistant told me "It is like a visit to the dentist. There will be a numbing shot, just a local anesthetic, but you will be conscious the whole time. The procedure itself is 15 minutes." In fact, it was a lot less painful than a visit to the dentist for anything but cleaning. Some folks do get an infection after a biopsy, because it leaves a simple cut which would be utterly risk-free on the arm (as in blood tests) but which cannot be easily covered with antibacterial cream and bandaid because of the location; I totally avoided any minor consequences like that, simply because I took basic precautions (and rested most of that day). Well... not ALL consequences; I opted out of a shopping trip immediately after the procedure, even though I felt utterly normal in the doctor's office, because I did need to lie down. 

After the call two days ago, I did a reasonably prodigious review of the literature on this subject. I learned that "Gleason 3+3" is the LOWEST (safest) score one ever gets from this kind of biopsy, aside from "no cancer at all/" I learned that there is a huge debate about whether 3+3 should even be called "cancer" at all, because the C word causes unnecessary false fears; it is debatable whether such a modest mutation of cells should be called "cancer," since it is not malignant.  The usual standard of care is "active surveillance" (AS), which consists of regular PSA blood tests and biopsies once a year (at least once anyway)...  followed by option for treatment only if and when the Gleason score gets higher (worse).

Then it gets fuzzy, controversial and unclear.

One of the important sources I found on this condition is... the web page and a pubmed paper by Sperling of NYU, one of the top centers for prostate cancer. It does flag something to me... when what I see on the web page is radically different from what I see in the paper! On the web page, aimed at prospective patients, he emphasizes a study by Hussein et all of 219 patients in exactly my state. Hussein found that all of the patients were later upgraded to Gleason 3+4 or worse, on average 24 months after the initial biopsy. Of those who elected no treatment when upgraded, five-year survival rate was under 20%. That was a real bummer for me to read, until I read more. But those who chose treatment (essentially just Radical Prostectomy, RP, in that case), it sounded as if pretty much everyone lived. But RP often has rather unpleasant side effects.

However, in the published pubmed paper, a more authoritative estimate said that only 11-41% of those who got my results were ever upgraded. It seems as if the peer review process demands more accuracy than marketing on the web page does! Caveat emptor. And deep thank to the new NIH policy encouraging open availability of research results.

However... it seems as if the test results at my stage are misleading in maybe half of the cases -- half of those better, half worse! Also, there are new "focal treatment" options which are far less destructive and risky than old style RP, available only when there is accurate enough imaging of a tumor before it becomes malignant. If everything I have is just 3+3 or better, focal treatment is not indicated, because nothing is happening, and today's science seems to know nothing about how to improve 3+3 cells. But a more accurate test is needed to find out whether that is the case, OR to identify the small tumor if there is any. It is ever so much better to zap a small tumor, if it exists, before it grows!

The relevant imaging technology is called mpMRI (multiparameter MRI) with 3 tesla main magnet supplemented by endorectal coil. The coil technology was originally developed at the University of Pennsylvania, but now the leading center is in Beth Israel hospital in Boston, near MIT, in collaboration with the Harvard Medical School, whose web page gives a very nice survey albeit 5 years old. The improvement over previous technology (including MRI) has been phenomenal. It also turned out that INOVA in Virginia (Alexandria) recently finished and reported a major successful clinical trial on that technology, and I really hope that I will get a chance to be tested that way relatively soon, to nail down where I am. The INOVA study was very specifically focused on using this technology to decide where to put "seeds", one of the few focal treatments methods which I think has been approved already by FDA. (I think laser ablation, the NYU method, is the other, but I haven't really nailed down yet exactly what FDA allows.)

One of my friends recommended JHU, but from what I see so far, Virginia, Beth Israel and NYU all seem better for this condition.

I am hoping NOT ONLY to survive, but to avoid the nasty side effects of RP even in the worst case, if GEHA and INOVA allow (and if it's not some freak condition).

I am a bit anxious about the long lines to use the MRI machine. It hits me how I did my best to support a new magnetic sensing technology, proved in the lab, by Massood Tabib-Azar of Utah, which should dramatically reduce the cost of the kind of imaging I need... but screwed up politics have gotten in the way of so many other things which are more of a matter of (everyone else's) life and death than this one!

I thank .. for offering to help me with access to relevant medical journal papers, though for now I hope I know enough for the next phase.

We will see what the next doctor visit results in.

Love,

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Of course, I did not say everything. I never say everything. There is always too much which could be said.

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It is interesting to compare this issue of personal mortality with the risk of human species extinction by H2S emissions from the ocean. Thinking in a clear and focused way on staying alive (and minimizing bad side effects of doing so), I clearly see the immense importance of getting an advanced MRI test both to be more certain of the risk, and more able to correct it if there is already even a small malignancy. For the H2S risk, I have tried to explain why the entire human species really needs an "advanced MRI," a focused effort to calibrate THAT risk.  It is just as important for collective survival -- which is a lot more urgent in my view than the number of years remaining to one old man.
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For another example – I actually funded a bit of the MRI imaging technology when I was at NSF. I mentioned to Luda that there are other people I know who know about MRI.

It is really true that I did not react with emotional confusion and thrashing and such when the news came through. It was more a matter of regret and boredom. “Man is mortal. So what else is new? Even if I die, it is not such a shock.” It was MUCH more of a shock to me on 7/14/14, for example, when I began the process of learning just how far the US government has eroded in recent years... and likewise as I learned that the obstacles seem nearly impossible (or maybe just impossible) to preventing a process leading towards extinction of the human species. Individuals dying – nothing new, nothing really unanticipated. But the entire species? THAT’S what has caused me ever so much turmoil and thrashing – legitimate rational thrashing, trying to figure out either a more hopeful way out or a way to adapt to ... unresolved questions about collective afterlife.  

Which reminds me a bit of the watch.

Were I voting in Iowa or New Hampshire... at this point I would vote for Kasich. Not because I expect him to have much chance, but because it would represent a kind of expression of honesty. Honesty is important. Neither Kasich nor Clinton are anywhere near perfect, but both are reasonably sane.

It seems that the Russians are losing a lot of their previous hopes for Trump. Trump began promising to be a new Teddy Roosevelt weeding out corruption... but it seems ever more clear that that was just the theme for the day, and that he is not into speaking softly and carrying a big stick either. (I will resist improper temptations to elaborate.) They are somewhat intrigued by mention of Kerry’s name ... but for now they ask: “Why not Bernie Sanders?”

Bernie Sanders reminds me of a woman I once read about years ago, who had an uncanny record in predicting the next president at an early stage, regardless of party. The interviewer asked: “How do you do it?” She smiled: “It’s easy. I just line up the photos of the previous presidents in order, and look to see which new one best fits the trend.” By that approach... in many ways, Bernie Sanders WOULD be the next president. Like what Obama represented, but more of it. More legislative approach. More “300,000 foot” good intentions. I think back to the time when Obama called a meeting of senior managers in the US civil service system and told them: “Don’t let these problems get to yoyu. I have your back.” That was a nice thought... but at the time my back was bleeding, so to speak, and I was trying to figure out just who really did the stabbing. Many of my colleagues had theories too, and some implicated Obama... but it seems to me he is well-intentioned... that it was more a case of “The cat’s away, the mice (or rats?) will play.” The rats... well, we at least need a president who knows who they are and faces the need to actually be a line manager. Within the US government, some folks even hinted they’d like me to try to play Captain America (ala Winter Soldier), but I said I am too old for that, and that one Romanov in the family is all I can keep up with.

In short – if Sanders gets elected, he will not become president, but will instead become either the Queen of England or Hindenburg. A kind way to put it is that he, like me, is too old for that job (though neither Clinton nor Kerry are.)

In truth, I still have vivid memories of Sanders from 2009, when I had a chance to join his staff. I had a really great hour one-on-one with him, and the same with Rohrabacher. Why did I choose to work in Specter’s office instead that year, when the personal chemistry and respect seemed so much more with Sanders and Rohrabacher? When Specter was famous for being one of the hardest people on the Hill to work with, a driving sonofabitch in many ways?

Well... as I think of the Republican field today, maybe Specter was more like the kind of person they really need... much more like an authentic Teddy Roosevelt, hardest of all for people who are corrupt, people who are ever so cooperative in working together to fleece the American people (e.g through legal exemptions and insane tax breaks for the oil industry, which Trump shows every sign of supporting). He had tough line experience. I remember two main considerations when I decided: (1) I liked seeing copies of Specter’s book Quest for Truth in the interview room; and (2) I felt he had a much better chance of actually getting something done that year than Sanders or Rohrabacher did. Sanders was good and pure in the sense of not getting his hands dirty or his mind confused trying to figure out the real nuts and bolts of what needed to be done to turn things around. In the end, Harry Reid, Obama’s mentor, made a lot of the “wise” strategic decisions which led to nothing at all useful being done in Congress that year in energy or environment, but Sanders would also be a team player in such wisdom  -- focused on legislation, but unable to get any. A lame duck from day one. Well intentioned.

Were I on Sanders’ staff, I would urge him to take more of a moral highground in attacking Clinton. He could say: “Clinton and Kasich are both conservatives, real conservatives, and I am the only real liberal. Those other folks are not really conservatives; they are all either nut cases or puppets of nut cases.” Or of billionnaires, I suppose, in his language, though there is a lot of variance amongst billionnaires.

And oh -- I do not regard Christie as anything like Specter, though he may be equally as difficult to work for. Even though he can be vehement in demonstrating solidarity with the pure Sunni sharia line and program. It is not that we need to go ANTI Sunni, lurching from one violent extreme to another, but we need to muddle through as best we can to some degree of balance. Many of these situations remind me of the old Chinese finger trap, where the more violently you tug the more you get trapped.  

Whatever. Back to other things – household stuff and some reading today.

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Also related to the species mortality issue is a post I did just now to Lifeboat:

Could the 0.01 percent preserve the human species?


More and more I hear from people who "worry" that the very rich will save themselves, through lifeboats of one sort or another, as the rest of the species succumbs to one or more of the fatal risks we are now facing,

In my view, it would be vastly preferable that the human species continue even that way rather than go extinct. If they want to develop that kind of backup insurance plan... I for one would want to help it succeed (so long as it does not reduce what hope remains for the rest of us). Better some humans than none.

More and more, I view the ultimate likely causes of extinction as a kind of "unholy trinity,"

with the acronym H2S/NUC/AI, where H2S refers to the various fatal things which can happen if H2S is outgassed in large quantities again from the oceans (as in 5 to 10 previous mass extinctions of life on earth), where NUC actually refers to a tricky combination of nuclear scenarios and technologies, and where AI is short for the Terminator kind of scenario (not including simple benign pseudo-AI like voicemail systems and Watson and such). (I do not mean to argue for a partiocular definition of what "AI" is in general -- just to specify what I mean here with this particular acronym.)

I worry a lot about other things, like world conflict, which could TRIP the lever, so to speak, on one or more of these three, but these are the bottom line.

And so: a key question here is: could or would the 0.01 percent actually build lifeboat or shelter systems strong enough to keep THEIR families alive, and thereby maintain the existence of the human species, even if the H2S or NUC or AI triggers get tripped, as now looks maybe 99% likely in the absence of something akin to divine intervention (which I fervently pray for but do not feel called to take for granted)? In my view, it would be a really great thing if a more serious and systematic effort could be mounted, in parallel with other good things, to try to find a positive answer to this question.

There was just a TV spot on the company Vivos, which is selling more and more systems claiming to offer such protection to people. With enough money, they claim they could keep your family alive for a whole year (presumably underground). I agree with the TV commentator who looked incredulous and asked: "Would one year really be enough?" In none of the big three final outcomes would one year be long enough to do more than postpone the end a little.

In the end, there is a crucial technological challenge here, which has been studied but deserves more attention: how is it possible to construct closed cycle habitats (or almost-closed habitats

with minimum external inputs), "terrariums to include people," capable of enduring for hundreds of years or more, and eventually reconnecting with the larger world on earth or in space?

Many of us know about the Arizona experiment on this, which was very well conceived, and simply did not work. The Arizona people said they learned a lot which would be really important to make this actually work... but I am not aware of any really serious effort to go to the next level with that. Likewise, I strongly agree with the space policy people who say NASA should focus more on economic self-sustainability in space rather than actual closed systems...

But in the end, I'd say that either the .01% are not looking out for their survival (as it also seems from climate policy), or they simply didn't notice how a relatively small extra activity in NASA

might give them a much more realistic option on these lines than anything else here in the real world. If anyone imagines that suborbital joy rides would help them survive what may be coming... they are further out of touch than even I could have imagined.


============== More on cancer, Jan 13

Had an appointment with Dr. X to discuss biopsy results and conclusions. In addition to hard copy full biopsy report, did more focused web searches, and borrowed three books from local library: (1) Patrick Walsh, Guide to Surviving, 3rd edition, 2012; (2) Jack McCallum, The Prostate Monologues; (3) Ablin, The Great Prostate Hoax.
Prostate foundation had some interesting articles.

Picture now changes, though question marks remain. Some things are known by no one.

Dr. X is an excellent surgeon, but he gave me a card of a radiologist in his practice to get a second opinion.
"We can't really get much information from even the advanced MRIs, but if you pay $4,000 for the newest, 4K,
it may be available. Talk to the radiologist; they love MRI. You can get the mpMRI+3T+endorectal from them, no problem." But: "You are not a good candidate for focal treatment, because your cancer was in 6 of the 12 cores,
and this is just a sample. On both sides of the gland."

Oops. Not as good as I hoped or even expected. If focal treatment is out... the precise MRI is not as useful as expected.

The hardcopy showed Gleason 3+3 in 5 of the 6 bad cores, but 3+4 in the sixth. Also oops.

A question in my mind: if 3+4 is the only one malignant, and if progression in the others does not depend on that... could it be that focal treatment on just that one be enough? OK, biopsy is NOT a basis for confidence that it's just that one site... but... could the fancy MRI possibly be such a basis and save a lot of trouble?

The McCallum book is just a patient's experience... but hey, that's what I am... an intelligent patient motivated to explore things. I was a bit surprised when he described a meeting with Patrick Walsh, the guy whose book Dr. X recommended.... where active surveillance did not look as good as it sounded at first. And the Prostate Foundation gave 10-or-more year death rates from prostate cancer as only half as much for those choosing surgery over radiation (including seeds). Even worse, the radiation normally comes with a hormone treatment which sounds much worse than the worst possible (though unpredictable) side effects.

Side effects of RP ... are hard to predict, but better with a good surgeon and better if the gland is removed earlier rather than later.

So... lots more to think about, but it seems more likely that I will bite that whole bullet, like it or not.

It's good to have a good surgeon (Luda has checked) with less than average side effects risk...