You can't always get what you want.

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Originally Posted by jono

I hope you didn't take my mention of your comment on keeping up as any sort of ad hom. Quite the opposite, I think the fact that you would say that so quickly just illustrates how fast things are moving.


Just checked my notes and found that the docs in Seattle were recommending about the same drugs, they just didn't have the same expectations. Their numbers were much less encouraging and they seemed totally unaware of the possibility of a complete response--or else they wanted me unaware of it. I think they were looking at a different trial of the same(ish) cocktail.

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I didn't take it that way at all. I agreed 100% with what you were saying. I was originally emphasizing the problem of docs recommending/patients requesting chemo and radiation with little hope of benefit. You raised the equally significant problem of docs not offering or being aware of treatments that can help. All of which brings up the biggest problem any patient with any kind of illness or injury faces--finding the right doctor. And as best as I can tell it's more a matter of luck than anything else. The big name isn't always the best.

My cousin, in his 40's, had a GIST tumor of the stomach--very different from the usual stomach CA. He went to University of Chicago, University of Michigan, and the Mayo Clinic for opinions but couldn't decide what to do. Then he started bleeding massively from his stomach and wound up in the ER of a private hospital and wound up having emergency surgery by an excellent, fellowship-trained surgical oncologist--no big name, but just as good or better than any of the other docs he saw.

(An old partner of mine specialized in surgery of the thyroid and parathyroid glands. He had a huge number of cases with spectacularly good results in terms of lack of complications--comparable or better than the best results in the literature. No one has ever heard of the guy outside of Kaiser docs in Sacramento. Another friend of mine was a missionary surgeon in Congo--he had by far the world's greatest experience repairing recto-vaginal injuries (primarily caused by bayonets rather than by childbirth) but he never wrote up his experience and no one knows about him.)

Your experience with U of W compared with the doc in Spokane (there's reputation for you) brings to mind a patient I saw for esophageal cancer. He wanted to know his chances with surgery. Based on his stage and the available adjuvant treatment at the time I gave him a number. He saw another surgeon who recommended the same operation but who gave him a grossly overestimated chance of prolonged survival. He chose the other surgeon because he claimed a better prognosis--for the same treatment. (I'm not equating his case to yours; I was just reminded of that case.) I'm glad you wound up in the right hands.

Sorry for all the long-winded posts. I guess I still miss surgery.

You raise a great point. Picking a doctor is a somewhat less broad version of deciding whether or not to head off to a "healer:" if you're going to choose based on who gives the best promises you're going to wind up with the best liar.

I kind of went full on machine-mode to avoid that (both in docs and other research) but I can't imagine most people would. At the time it seemed normal. I just accepted the possibility of the worst outcome without accepting its certainty and figured I'd "cope" later--or not. The willingness of my ultimate doc to focus on a plan that ended with "then we're gonna call Ryan and he's gonna cut the crap out" (even if that plan might be derailed by some possibility or other) matched my own outlook. And, importantly, I thought, gave me an advocate with the surgeon, who I had already met with by then. The other guys seemed like they'd be a PITA when we got around to surgery.

My surgeon matches well with the examples you gave--multiple fellowships, first in Washington to do a certain hyperthermic chemo during surgery, and the guys at UW knew more about him than the other way around, but who would expect that to be the case?

Meanwhile I believe the guys at UW failed to follow the staging guidelines by defining an abdominal lymph node as "distant" in order to arrive at stage 4. But if your ad line is "Better Outcomes" it's always easier to ensure that "better" is compared to the worst case scenario. That's something I did not expect: that there is a roundabout sort of incentive to make all your patients appear even sicker than they are in order to boost your stats.

Another sorry for the long posts, but thanks for all the kind words everyone! The support of friends and strangers through this whole thing has been amazing and more helpful than I could have guessed.

There just isn't a lot of data out there on how good a doc is, except for surgeons doing repetitive operations, and even then the data may reflect case selection rather than skill. A surgeon with bad numbers might be the guy willing to accept difficult cases, the guy who takes cases that shouldn't be operated on, or just bad. How can anyone know? Docs don't know who the good docs are.

We've got a surgeon and a cancer warrior in this thread but I'm putting my money squarely on Benny's insights.

Hey Benny had coffee once near a surgery so he's almost a surgeon when you think about it.

https://uploads.tapatalk-cdn.com/201...d5db51db29.jpg

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Originally Posted by old goat

There just isn't a lot of data out there on how good a doc is, except for surgeons doing repetitive operations, and even then the data may reflect case selection rather than skill. A surgeon with bad numbers might be the guy willing to accept difficult cases, the guy who takes cases that shouldn't be operated on, or just bad. How can anyone know? Docs don't know who the good docs are.

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I'm not sure if I'm glad or sad about this, but it's different for cancer care centers. I'll provide an example. Note that the results are tracked/compared by stage and that the folks at Seattle Cancer Care Alliance (whose website contains the following quote) a) relied on a CT scan (not a cancer-detecting PET, which subsequently became very difficult to acquire from insurance thanks to their "certainty") to b) over-stage my case by stepping outside the staging guidelines and c) told me at the time that "there is no re-staging." So if I'd been their patient they would have kept me in the stage 4 column for the NCDB even if the diagnosis became questionable later.

From SCCA's website:

"If you or a family member has been diagnosed with cancer, you have choices to make about where to receive care. Comparing survival rates among cancer centers is one way to help evaluate your options.

The charts in the sections below show the survival rates for patients treated by Seattle Cancer Care Alliance (SCCA), according to the National Cancer Data Base (NCDB) Survival Reports. The NCDB reports also compare SCCA patient survival rates to survival rates for patients treated at other academic medical centers, large community hospitals, and small community hospitals. The data shows that, in general, SCCA patients have better outcomes than patients treated elsewhere. Patient survival rates are categorized by stage of diagnosis for each of the following types of cancer:..."

Their TV ads featuring the line "Better Outcomes" are more irritating than neuropathic toes. If there was a way to know whether a doctor was going to pull that shit ahead of time it would be worth knowing. Even so, I don't believe anyone I met there acted from a purely cynical place. They were trying to do right by their patients but I'm not sure they had any aversion to pumping their numbers along the way.

1) Too little info on Ron Wood's lung cancer to determine whether his "decision" was reasonable or perhaps foolhardy. But in the end, he's an adult, and if his senescent long-marinated brain can reasonably weigh the pros and cons, and if his med and surgical oncologists have explained them well enough, then good for him regardless of the outcome.

2) jono, not sure if I'm reading this correctly, but you seem to have a bit of a chip on your shoulder about SCCA having "unfairly" upstaged you, therefore deciding you weren't a surgical candidate..? Is that a correct assumption?

Again, not enough info to say if the decision is sound one way or another, but to infer that they are doing so simply to "pump their numbers" seems, um, a little much. Yes, I understand it is your life at stake, and you are perhaps peeved for that reason, but discounting their assessment based on that assumption is remarkably cynical. Although I wouldn't put it past them (or anyone) entirely, I don't think that is the general modus operandi for most academic cancer centers.

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Originally Posted by Tri-Ungulate

1) Too little info on Ron Wood's lung cancer to determine whether his "decision" was reasonable or perhaps foolhardy. But in the end, he's an adult, and if his senescent long-marinated brain can reasonably weigh the pros and cons, and if his med and surgical oncologists have explained them well enough, then good for him regardless of the outcome.

2) jono, not sure if I'm reading this correctly, but you seem to have a bit of a chip on your shoulder about SCCA having "unfairly" upstaged you, therefore deciding you weren't a surgical candidate..? Is that a correct assumption?

Again, not enough info to say if the decision is sound one way or another, but to infer that they are doing so simply to "pump their numbers" seems, um, a little much. Yes, I understand it is your life at stake, and you are perhaps peeved for that reason, but discounting their assessment based on that assumption is remarkably cynical. Although I wouldn't put it past them (or anyone) entirely, I don't think that is the general modus operandi for most academic cancer centers.

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Upstaging cancer in order to improve stage by stage survival is a fact of life. Sometimes it's deliberate to improve statistics. This is not cynicism; it's reality. Whether it was the case in Jono's case we don't have enough info to know. Sometimes it's an artifact of the kind of treatment a patient gets--the more tests a patient gets prior to treatment the more likely it is that metastatic cancer will be detected and the cancer is upstaged. As outcome data becomes more and more available to the general public and as reimbursement is increasingly tied to such data the problem will get increasingly worse. As I said before--measuring the quality of medical care, except when there is frank malpractice, is extremely difficult.

My point in bringing up staging and my experience at SCCA was really just to point out that as OG says, it's difficult to assess quality of care and that this is compounded by the fact that the one seemingly objective measure can be manipulated. Knowing whether it is or not is probably impossible: you could dig into an institution's numbers but how would you account for the fact that people with later stage cancers are more likely to seek out institutions with more experience in them?

I don't think the only reason for upstaging in my case was stats. In fact, the associate professor doing the teaching stated quite matter of factly that he'd never had anyone complain about having been given worse expectations and exceeding them. If I see him I guess I'll be the first because the imaginary number created real life problems and I'd have been better off (and one could argue more accurately staged) if they had simply refused to assign a number ahead of a PET, as did all the other doctors I saw.

Some of that comes down to experience fighting with insurance (which is a very significant part of this whole process) and some I chalk up to simple academia. I'm not sure how to further describe that concisely, or if it really has any relevance so I'll leave it at that. All I can say with certainty is that there exists an apparent ethical conflict when an institution's marketing can take advantage of mistakes or a consistent reporting bias.

I don't think that there's any doubt that all bureaucracies take as their primary mission their continued existence, success and growth. All, not just medical bureaucracies. So if there's a way to work the numbers in their favor even basically decent ethical people who work for bureaucracies will have a hard time resisting the urge (and their colleagues' urgings) to follow that path. It's always caveat emptor in all such dealings and good on you Jono for doing your own due diligence.

Ronnie plays an appropriate song:

Thanks for writing that shit up jono, it rings of truth. I sincerely wish you the best from deep in my heart.

This is one of the better discussions I've seen here.

Fuck cancer.

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Originally Posted by plugboots

Ronnie plays an appropriate song:

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Awesome choice of song (Jimmy Reed, the patron saint of alcoholics everywhere), and, it starts out well, but notice how he loses it slowly towards the end. Just sorta lacks energy. Not saying it's the effects of cancer at all, more like, he's old, and just can't play at the pace he's used to. There's a reason a lot of old blues guys performed sitting down.
Was watching a thing on MTV live with Fogerty doing a concert. Same thing. Starts out punchy, but, just tires out in a short time. I once heard Clapton say that there is no way he could do Cream stuff even at 45. Too physically taxing. Can't reproduce youth plus speed and coke, even with all his riches. Saw Dick Dale recently, and he can still whip it out at his age, but, has developed a Vegas like schtick that involves a lot of long storytelling breaks. Playing rock and blues fast and hard is a young man's game.

I saw Earl Scruggs and Doc Watson play in their 80's (heard Ralph Stanley sing the same night). Those guys could still play lightning fast and clean. They did play sitting down though.

Ronnie slows down at the end because he's playing to 8 news dorks in a boring studio at the end of the episode. That was almost 5 years ago.

Go see Jeff Beck.

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Originally Posted by Tri-Ungulate

2) jono, not sure if I'm reading this correctly, but you seem to have a bit of a chip on your shoulder about SCCA having "unfairly" upstaged you, therefore deciding you weren't a surgical candidate..? Is that a correct assumption?

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I can see how it reads that way, but honestly I'm not all that worked up over it. This discussion probably got SCCA as much attention in my head as they've had in 6 months. Too many unknowns to worry about it--the way it all worked out they played a role in a very unlikely sequence of events that got me to the right doc. I can't even prove a) that they were wrong or b) that, right or wrong, the delay getting the PET didn't actually save my life. Course, the ride ain't over, and the impact of missing peak disease by waiting until a round of chemo is over is more likely negative then positive (most likely it changed nothing, of course), but one never knows.

I went into more detail on that because it seemed like it might be useful to someone else. For me it's the past. I'm loathe to say anything negative about any of this, really. There's plenty of that it there. Mine's a really long story now and it's a rollercoaster for sure, but the positive experiences along the way have been numerous and mind blowing and I have no regrets.

Except maybe cunting up Ronnie's thread. How is it these guys all have the ageless hair and the two hundred year old faces?

Like I said, Hair Club For Men.