Guest post: What would you do?

This is a guest post by regular commenter, AnOilMan. It’s rather personal and reflective, so please bear that in mind. I don’t have anything else to add, so will let AnOilMan take over.

What would you do?

Growing up, I was always prone to having colds that clung on. I’d have a cough for months afterwards. But last fall my coughing didn’t clear up. In fact by Christmas, I was coughing so hard that I was having a hard time keeping food down and friends started telling me to go and see a doctor.

An XRay, and some meds later the coughing mostly cleared up… mostly. A few months ago I was sent for a second XRay and based on that, I was sent for a CT scan.   On the day I had the CT scan my doctor’s office hounded me to come in the next day. (They never do this… Let alone speak to a strange doctor since my GP wasn’t available.)

I sat down, and the doctor said that based on the XRays and CT scan they know that there is a mass growing in my right lung, and it has spread to my left. Its likely cancer, although an infection hasn’t been ruled out yet. A lot of things went through my head. But mostly, will my wife and kids be taken care of if I die. (Yes, I’m well insured.) Then I tried really hard to think of all the questions my wife would ask because I know she’d ask a lot, and that means she’ll ask me a lot. I was told that I would be seeing a specialist soon, and that everything was already in the works.

As I was heading home I stopped to get gas for the car, and started texting people. As the risks started to sink in I felt faint. I waited for that to pass before continuing on my way.

The thought I dwelled on the most is what kind of world am I leaving behind for my kids? Will they be in an unpleasant place with food shortages and constant heat waves? What will the world be like for them? Have I done enough for them?

Should I freak out about all this?

No… It’s not like we know what this is. But there is no doubt that the risk is serious, and it’s quite possible that the result may be a fast and brutal result.

http://www.cancercenter.com/lung-cancer/statistics/tab/lung-cancer-NSCLC-survival-statistics/

Should I ignore all doctors out there because there have been a few quacks getting up to no good?

Clearly like any other field there are disreputable folks who will do whatever they can get away with to make money. So… should I ignore all doctors for the failings of the few? I don’t think so. I think I’ll check into the people who’ll be looking at me though.

https://en.wikipedia.org/wiki/Andrew_Wakefield

Should I listen to organizations that are paid to spread misinformation?

Consider a company that profits from selling medication and smoking cessation aids like Pfizer. Is it reasonable to listen to PR firms supporting the pro smoking lobby? Not that I smoke… but it’s hard to imagine listening to PR firms handing out paid advertising, as Heartland/Pfizer do.

http://thinkprogress.org/climate/2012/12/19/1362861/heeding-public-outrage-pfizer-drops-climate-denial-and-tobacco-front-group-heartland-institute/

Should I read information from strange people on the internet?

There’s always someone somewhere crazy enough to claim they’ve got a miracle cure for something. Would you like a tin hat with that?

https://www.youtube.com/watch?v=lm-tKEpJs7I

What about web sites that believe in UFOs and other conspiracy theories?

Seriously? Are these places credible enough to listen to? Should I worry? Maybe someone out there doesn’t like what I say!

http://www.ufo-disclosure.net/blog/are-ufo-researchers-being-targeted-with-cancer-causing-microwave-weapons

http://www.cancertreatmentwatch.org/q/conspiracy.shtml

Should I listen to someone who only has a high school diploma?

Interestingly I can’t find any examples of this in the real world. Perhaps it happens in the third world, but medicine is regulated for our safety. In climate science we have colorful people like this;

https://en.wikipedia.org/wiki/Anthony_Watts_%28blogger%29

I tend to think of him as the Dr Nick of Climate Science;

https://en.wikipedia.org/wiki/Dr._Nick

How about a massage therapist with a bachelor of psychology?

Would that person be able to advise me on growths in my lungs? No. I don’t think he’d be qualified.

http://www.desmogblog.com/willis-eschenbach

Should I decry the fact that I’m using state funded health care and try to go it alone?

Libertarians think that state funded health care is somehow inferior. I call completely and total bunk on that. I live in Canada where we live longer than Americans and pay way less for health care.

https://www.lp.org/issues/healthcare

Maybe I should ignore it all!

Let’s face it, the CT scan was digitally dictated using Dragon voice recognition software. It’s entirely possible that it’s just a glitch, so I should just ignore all this and go about my life. Right? Is that a reasonable response?

http://www.nuance.com/naturallyspeaking/customer-portal/documentation/userguide/chapter5/ug_chapter5_correcting_editing.asp

Or should I trust an educated, decorated doctor who specializes in this field, and who has had considerable success in treating lung disorders?

Clearly he’s biased, he wrote the SOPs for most of the treatment processes. He also has a patent on one of the sensors he’ll undoubtedly be using. He also pioneered getting DNA typing into the biopsy process in this region.   Furthermore, he directly makes money from the treatments.

As I was thinking of all that I remembered an interview between James Delingpole, and Sir Paul Nurse.

Apparently equating climate science denial to quackery completely floored him. I think that’s because Delingpole knows it’s true;

http://www.theguardian.com/environment/blog/2011/jan/24/james-delingpole-tv-interview

For what it’s worth, I’ll be listening to the decorated doctor who specializes in this kind of treatment.

What would you do?

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45 Responses to Guest post: What would you do?

  1. jsam says:

    What would you do?

    I would wish you all the very best. My fingers and toes are crossed; pier reviewed Youtube shows me that works.

    Seriously, all the best.

  2. I’ve already said this to AoM via email, but I really do hope that the prognosis is positive, even if there are going to be difficult times ahead. All the best.

  3. NevenA says:

    Well, I wouldn’t stick my head in the sand and deny the existence or potentially serious consequences of my disease, because that would be terribly foolish. But how to treat it, I don’t know.

    Where the analogy breaks down, is that whatever the patient does, he will die one day, even if he completely recovers from his disease. The idea is that society continues to live (indefinitely, in theory) if it chooses the right treatment.

    But you’re aiming for another aspect of the analogy and that’s that denying the existence of a problem is not a rational way of dealing with it, especially if practically all the experts maintain you have a problem. And so again, what I would, is to not deny the problem and associated risks.

    All the best.

  4. It might sound like passing the buck but ask your physician what they would do. It’s sound advice because they see more patients in your situation than you ever will and they know what the likely outcomes are. In the meantime, I guess they are looking into the infection possibility as that is the possibly kinder of the options. Having kept the company of my father as he fought cancer for twenty-two years, there is reason for sensible optimism.

    What I would do? Just what you are doing. The specialists don’t spend years training just to give you a fruit smoothie or a coffee enema but will give you something that has at least a proven beneficial effect. If you haven’t already, Google Orac respectful insolence so you know just what woo to avoid. Fighting alongside a team is much more effective than picking the lone maverick to be your sidekick.

    And, to repeat what was said above, all the best.

  5. Wish you recover again.

    Denial is no solution. The solution you do chose is your decision informed by the doctor / science.

    AnOilMan, do not forget your general health, it is the foundation.

  6. JCH says:

    My brother-in-law had a cancer associated with Agent Orange. He did three tours in Southeast Asia. At the time we lived about 5 minutes from MD Anderson in Houston. It sounded bleak as H. He’s nine years out. He lived with us for a year while undergoing treatment there. MD Anderson is all about science and training doctors. He’s 9 years out and still in remission. There are hospitals of that quality in most regions of the USA and Canada. A year later my brother got cancer. We made the same offer. He elected to undergo treatment locally. He’s 8 years out and still in remission. His radiation oncologist trained at… MD Anderson. His hospital work closely with the Mayo clinic. I’m not saying go to MD Anderson. I’m saying our family benefitted from well-trained physicians who kept up with the cutting edge of science and treatment.

  7. Maybe I am more able than most to advise, as I’ve been there myself.

    In 1984 I made repeated but unsatisfactory visits to my GP, as I was experiencing a continuous background headache. It’s a long story with a few ups and downs but in the end, thanks in part to the advice of my brother-in-law, who was a medical student at the time, in the end I was diagnosed by a top-notch brain surgeon who subsequently operated to remove a tumour, very successfully.

    Then in 2013 I realised I had a lump appearing on my neck. Again, I immediately pursued it and after investigation the throat cancer was treated with an operation followed by chemotherapy and radiotherapy. I’m currently in remission with no signs of recurrence.

    So my advice. Go to the best people you can, ask questions and then go with those with the most experience. Put your total trust in them.

    You have my best wishes, AnOilMan.

  8. Howard says:

    I’d do the same thing when I had to get a bilateral hip replacement ~15 years ago. I got a local DX, then a second opinion at Stanford.

    The Stanford guy said to wait until I could no longer stand the pain, then get a consensus, NASA certified, UN approved gold standard total hip replacement that involves the amputation of the femoral head and neck, drilling a 6-inch deep hole into the femoral cavity, stuff the hole with a metal stem implant topped with a 28mm vitallium ball with an HDPE acetabulum socket. I mentioned the ballet dancer who returned to dancing after a double hip metal/metal resurfacing. He told me that he knew those guys down in LA pushing this dangerous experiment and he refused to participate in their trial. The “top man” at Stanford gave every indication of being an authoritative slave to the consensus, was defensive and gave every indication of a marginal competent, I looked for another opinion.

    Called up an old college crew teammate who is an orthopedic surgeon. He gave me the same advise as the Stanford guy and added in scare stories about the metal toxicity from the cobalt and chromium. Knowing that these metals in zero-valent form are non-toxic and my shell-mate was full of it, I then started searching the internet.

    This led me to a hip resurfacing support group that had folks had just started in the FDA trial and those considering joining the trial. I then spent about a dozen hours every week for a couple months reading technical papers, pro, con and indifferent. Learning about obscure medical stuff like stress shielding, Wolff’s law, effective joint space, impingment, wear debris, osteolytis. To the horror of my family, friends and parents, I had convinced myself that the consensus was wrong and resurfacing was the way to go.

    I ended up going to LA and interviewed the maverick surgeon. He was the opposite of all the other docs by answering all my questions with the appropriate level of scientific detail and uncertainties. It was the opposite of a sales job. In those days, the only options were in the States, Belgium, UK and Australia. All the resurfacing implants developed at that time (the German effort had already failed) were done at private research centers in Los Angeles and Birmingham. Once approved, these new implants were made available to the socialized medicine “free-riders” like Canada who rely on the expensive private markets in the US and elsewhere to create real-world solutions and then are pilloried for it.

    15-years later, I have no restrictions, including running. I also still have my femoral head and necks.

    I am aware of the problems with resurfacing that have cropped up. Interestingly enough, my surgeon predicted all of the major risk factors 15-years ago, including small boned people (women), low bone density (elderly), bone defects (avascular necrosis, pitting) and most of all, the skill of the surgeon. Orthopedic surgeons don’t typically finish at the top of med school and there was no board certification at that time. Since the femoral head and neck are not amputated, the surgical space to work in is quite cramped, leading to mal-positioning of the implants.

    I ended up meeting half a dozen former patients of the Stanford “top-man” consensus surgeon. They were all recovering from revisions. Turns out, he lets his students do the work while he watches.

    Good Luck

  9. Bobby says:

    Wishing you the best and hoping for a recovery.

  10. mwgrant says:

    As others here have noted you definitely should not ignore the situation. Whatever the mass is you have decisions to make down the road. You need to be informed as possible. Also you should not freak out–googling the topic of lung cancer can be a maddening experience capable of both raising expectations and scaring the hell out of you. Neither of those effects help. If it is not cancer you can relax–but not completely. I noticed that the link first listed refers to the Stage 4 (distant metastatic) NSCLC. If it is lung cancer, type and stage are important to outcome. At this point you do not know…one step at a time. I wish you the best of luck and calm as you go through this trial.

    Speaking from experience, seen all three of the outcomes you mentioned (not LC, LC survival, LC not survival), and still trying to figure it out. Again I wish you all of the best and again you should not ignore this situation.

    mwg

  11. anoilman says:

    Thanks folks. I appreciate it.

    I’m not actually looking for sympathy. I’m not pining over some bucket list. I’m good.

    Strictly speaking, this early it could still be diagnosed as nothing significant. However the uncertainty monster is not a tame beast when you have something growing in your lungs. That’s probably why the experts put me on the top of the queue for diagnosis and treatment.

    The reason I wrote the story above was point out just how untenable the global warming denial rationale is. Querulous, biased, nick picking, irrational, from mostly people with poor education, and or paid vested interests. That’s no way to approach the world or make appropriate decisions.

    Perhaps its just an errant seedling…
    http://www.dailymail.co.uk/news/article-1169861/Shocked-Russian-surgeons-open-man-thought-tumour–FIR-TREE-inside-lung.html

  12. Joshua says:

    AOM –

    Reading something like your post helps us all to maintain perspective – and so first I want to express my appreciation to you for writing it (and to acknowledge your courage in doing so). Anders, thanks for posting it.

    I have lived for years with a hospice nurse, and taken care of three immediate family members who died from cancer. Based on those experiences, and given the luxury provided me in thinking about your situation from an abstract remove, and looking at the prognosis statistics from the CTCA in the link you provided…I like to think that what I’d do is focus on quality of life in the immediate term – contingent on diagnosis and prognosis, of course. So while I would certainly listen to and seek out experienced doctors who were most familiar with the scientific consensus – I would also seek out doctors who are specifically focused on maximizing quality of life within the context of treating disease. In my experience, many doctors are susceptible to losing a sense of how to balance those competing priorities. That said, I am well aware that an abstract resolve to prioritize short-term quality of life often changes in the pressing reality of staring down mortality, and I would work hard on trying not to judge myself for whichever choices I might make were I in your situation.

  13. dhogaza says:

    Howard:

    I notice that in your effort to diminish the value of experts, you failed to mention that in your search for the proper hip therapy you stuck with high-level experts.

    You didn’t, for instance, ask Anthony Watts or Steve McIntyre to operate on you.

    Surgical help for hip problems is still evolving, with several viable approaches available, and new knowledge coming as time goes by and the efficacy of treatments done a couple of decades ago can be evaluated with the passage of time. It is also true that it’s unlikely that a one-size-fits-all treatment regime exists.

    If you think this applies somehow to the denialsphere’s treatment of climate science, just ask me to do your next hip surgery. I’m a software engineer with a math degree, after all, what other qualifications do I need? And I own some dull knives that I try to inexpertly sharpen from time-to-time.

  14. Mal Adapted says:

    “For what it’s worth, I’ll be listening to the decorated doctor who specializes in this kind of treatment.

    What would you do?”

    I’d do that, but I’d probably also try to identify another highly-qualified specialist to consult with, and hope they don’t disagree substantively 8^(!

    Speaking for myself, AoM, I’m doing the atheist’s equivalent of praying (i.e. wishing and hoping) for you.

  15. Magma says:

    Best of luck with the diagnosis, the treatment (if needed) and the outcome.

    Regardless of whether or not you yourself have a serious lung disease – and please accept my wishes for a false positive – millions of people around the world die every year as a result of entirely preventable lung diseases caused by tobacco, asbestos and fossil fuel combustion… the risks of which have been deliberately and callously denied by those with vested financial interests.

    Like many other people of my age I’ve watched loved ones die from such illnesses. It enrages me.

  16. Eli Rabett says:

    Best of luck, best of care and all our hopes for you to be well.

    Eli

  17. Michael Lloyd says:

    My very best wishes for you. Your humanity comes through on your comments. Keep them coming!

  18. Rachel M says:

    All the best to you, OilMan. Thanks for sharing your story. I’m pleased to hear you’ll be following the expert consensus. I would do the same.

  19. I wish you all the best, OilMan, and your post makes good sense, as usual.

  20. mwgrant says:

    Joshua,

    Excellent, thoughtful words. Certainly with me you have hit a resonance. In particular, “I would also seek out doctors who are specifically focused on maximizing quality of life within the context of treating disease,” is very important. Doctors can become very involved with treatment and so it is very important to have team members who focus on other aspects such as quality of life.

    “I would work hard on trying not to judge myself for whichever choices I might make were I in your situation.” Yes.

    mwg

  21. Joshua says:

    Thanks, M-dub –

    Understandably, but unfortunately, a lot of doctors are not very skilled in addressing end of life care. Their professional interest can lead them towards seeing only the disease, and not the whole patient, and their family, and the importance of maximizing the time where people feel well-enough to have a good end of life. And sometimes there can be an unfortunate dynamic where some of the doctors who are most skilled at treating disease are the least skilled in seeing the whole patient.

    There is increasing awareness of this problem. For example, it might help that medicare is now going to start paying doctors to have discussions about end of life care; but there can also be a lot of resistance, as with Sarah Palin and her whole “death panels” attack.

  22. Kevin O'Neill says:

    Unfortunately, the sane answers are reserved for the sane. Just as in climate science, in medicine, finance, and virtually every other field there are quacks and crackpots – and just as in climate science they have a belligerent, voiciiferous following. I guess then that we shouldn’t be surprised that the Moncton’s, Watts, et all have an army of true believers at their backs.

    I’m not sure what Howard’s point above was supposed to be, but it reads as a typical justification for why *not* to follow expert advice. I.e., I know anecdotally of an instance where the experts were wrong, therefor following expert advice is bad. Hence climate change is a sham!

    Good luck, AnOilMan.

  23. matt says:

    All the best AOM

  24. This TED talk might give you some ideas.

    Salvatore Iaconesi: What happened when I open-sourced my brain cancer

    This is his website:
    http://opensourcecureforcancer.com/

  25. Roger Jones says:

    G’day AOM,

    if you haven’t read read Steve Schneider’s Patient from Hell, you really must (and everyone else, too). http://www.amazon.com/Patient-Hell-Worked-Doctors-Medicine/dp/0738210781

    It got him in the end (has just been five years and still gets to me something chronic), but Steve’s insistence on getting it right changed protocols for the treatment he was getting. One great example: he worked out the isolation room he was in had a much higher air exchange rate than they were assuming because it had never been properly assessed.

    I got your diagnosis-and-link to the climate debate and immediately thought of this because that exactly where Steve was coming from. It’s a living example on the links between the evidence base and life and death decision making.

    Also cred needs to go to the people who supported Steve through this, especially Terry R. It’s never one person who becomes ill, it’s all those who are close. I gather from your post that there are people close who matter, so all power to you and yours.

  26. Howard says:

    dhogaza: That’s right, it’s about separating the weak from the talented “experts”. The world has always been full of mediocre experts and crackpots and the people who reflexively defend them, like Kevin O’Neill and most of the commentators at WUWT. BTW, all medical conditions are anecdotes to the patient and the goal is not to become a statistic, but an outlier on the positive side.

  27. Rob Nicholls says:

    AnOilMan, my thoughts and very best wishes are with you. Thank you for sharing this.

    Your analogy is hard-hitting. It is shocking to think that humanity is currently going against the advice of the expert specialists when it comes to the future of this planet’s climate and all that this entails.

  28. anoilman says:

    Thanks for all your kind words. I really do appreciate it.

  29. Andrew Dodds says:

    Good luck with it all..

    And yes, there are many parallels with between medical quackery and climate denial. The heroic Gallelio complex being pretty common – often from bogus doctors who are making a fortune pedaling snake oil whilst whining about ‘Big Pharma’.

  30. Sam taylor says:

    AoM

    To answer your question about what I’d do, I’d probably be crapping myself and running about like a headless chicken, as opposed to writing insightful blogposts. Well done for that.

    To expand the metaphor a little further, in situtations like these one must also be careful of not giving in to false hope (lukewarmerism) no matter how attractive the low end of the probability distribution looks. Facing up to the situation in an honest and straightforward way, as you have, is the best response.

  31. angech says:

    A few months ago had a CT scan? May have misread you.
    If cancer confirmed by sputum cytology or biopsy and in both lungs technically not operative.
    I have seen several patients do very well even at a late stage with radiotherapy to the chest.
    The treatment has a small hope of eradication and a massive chance of boosting your life expectancy at very little risk of unpleasant side effects.
    If successful in shrinking the tumours and they regrow later a second treatment can also help but it is very rare to be able to do a third treatment due to the tissue damage from the radiotherapy if done twice.
    There are some amazing new anti cancer drugs out there. Their names usually end in MIb or Mab, monoclonal antibodies shorthand. If you have the right cancer or the right MIb there is a chance of the disease being switchef off for years. They have them for Melanoma but not yet for lung cancer though I am sure they are being worked on. Ask your specialist if there is a trial of one somewhere nearby you can get into if your goal is to push all buttons. Again there are usually few side effects compared to chemotherapy itself.
    Good you have insurance for the family.
    Hope this may help.
    All the best

  32. anoilman says:

    One thing that I really really notice is all the people who are usually around here peddling their BS are distinctly quiet. I think we all know what kind treatment plan and experts they’d be listening to. *wink* *wink*

    angech: The CT scan was 12 days ago. I’ll be seeing the specialist tomorrow. (I’m not actually looking for advice on medicine. We don’t know anything yet.)

  33. victorpetri says:

    We had our differences, but of course, I wish you all the best.

    Get the advice of the best experts, but decide for yourself which route to take.

  34. John Hartz says:

    anoilman:

    “May the Force be with you!”

  35. angech2014 says:

    No news is good news. I would be anxious to speed up the medical advice though and get a good specialist. All the best to you and fingers crossed.

  36. Oilman, that is tremendous, thanks. Just posted as a comment (in moderation) and latest RealClimate:
    http://www.realclimate.org/index.php/archives/2015/08/lets-learn-from-mistakes/

  37. afeman says:

    Oilman,

    Crap, upon first reading the OP I thought it was a hypothetical. Best wishes to you!

  38. Best hopes for you ..

  39. anoilman says:

    Folks, I wasn’t expecting such a strong response to my predicament, but since that happened I think I shouldn’t leave folks hanging. Besides someone is bound to notice that I’m still alive.

    The diagnosis came back with ‘not cancer’, but an ailment popular with House (or so I hear). Untreated it can be lethal. I suppose I could still look into weird alternative treatments, or call a Chinese Herbalist, but I decided to go with my doctor’s advice.

    Within 24 hours of taking medication my symptoms all cleared up, and I can breath normally. This was expected considering the hundred years or so of research into this condition…

  40. Michael Lloyd says:

    That’s good news. Phew!

  41. Andrew Dodds says:

    aom –

    That’s good news. Have to say that your original post didn’t quite sound like a standard lung cancer diagnosis, due to the ‘several months’ bit – showing strong symptoms before Christmas and still being capable of posting the next July. Lung cancer has a nasty habit of going from asymptomatic to catastrophic in a very short time (just like pancreatic and ovarian cancers),

    Of course, Doctors have a duty to be quite alarmist about these things – if your doctor had said ‘almost certainly nothing to worry about’ you might be a bit miffed to discover several months later that there was, in fact, lots to worry about. So, the opposite to how we should treat potential civilization-ending threats, then..

  42. BBD says:

    The Devil looks after his own, OM 😉

    Take it easy on the celebratory cigars, though.

    Dx

  43. Delighted with the good news, and it relieves me as I used your powerful fable to remind people of the Nurse-Delingpole awfulness elsewhere.

  44. afeman says:

    Great to hear that, thanks for the update.

  45. Pingback: Three years! | …and Then There's Physics

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