I’ve gotten lots of responses to “The Cancer Industry: Hype vs. Reality,” a column I posted here and talk I gave at Stevens Institute of Technology last week. Some responses were angry and dismissive (see this discussion at Hacker News), others were thoughtful, informative and heart-wrenching. I’ve lost loved ones to cancer, so I know how painful it is to talk about tests, treatments and costs, and about balancing hope and realism. But we must have these conversations to improve cancer care in the U.S. Below are a few emailed responses, edited for brevity. My thanks to all the authors, some of whom prefer to remain anonymous. – John Horgan
From Jim McElhatton:
Your article was not only informative, but also a very difficult read for me. My son, age 6, was diagnosed with a brain tumor 18 months ago. He developed an allergy to a standard chemo regimen. Then, he went on another tried and true generic chemo drug. He had stable scans until last month. Throughout all of this, my son was able to go to school, graduate pre-k, play t ball, make friends, dig for dinosaur fossils and live his life because scans remained stable. And status quo equals life. He is still doing well. He went to school today.
At this point, our treatment options have changed. And so we are trying an MEK inhibitor, which I suspect would have been among the newer sorts of drugs your story reported on. Respectfully, while I understand your point about the costs of these and other drugs, what would you have me as a father do? Moreover, there is good reason to believe inhibitors can help in the treatment of tumors such as the one my son has. At the same time, please know that I, too, share your concerns about the influence of money in healthcare. And I am sickened and angered when I hear anecdotally about families, their lives already upended by cancer, being bankrupted by drug and treatment costs.
As every family member can tell you, there are no sure things or guarantees in life. But whether it could be this drug, or another one not yet in development, if there is some medicine that could help my son and children and adults like him, what else is any family member to do but to push and try anything and everything? Certainly, nobody should ever go bankrupt in the process, but what else is more important than trying? The answer, of course, is nothing.
From John Hannah:
Your article was quite illuminating to me considering my life of the last decade. Since I turned 65, I have been reelected to a state agency governing board twice (Lower Platte North Natural Resource District), chairman of the board for two years, sit on the Nebraska Land Trust board, have worked with a watershed improvement group that managed to be the first stream in the USA to be delisted for atrazine contamination, grew my crop consulting business, started flying a drone to do insurance adjusting on crop damage, have been to education/trade shows coast to coast, served as a test tooth drilling dummy for 4 different dental school students at UNL, and taught an 83 year old man to read who then went to college. In short, I have been a really busy boy for a nearing 76-year-old fart. There was also time for nurturing the family with numerous activities.
One might ask the question, “What accounted for this burst of intense activity by such an old dude?”. The answer is that I felt obligated, it was about a bit of guilt trip though it was fun. It was about the $350,000 that society spent on me between 11 and 9 years ago. Holy smokes you say? Yes. I came down with stage 4 colon cancer and had a colon resection plus a surface tumor shaved off my liver, then 6 months of chemo, followed by a liver resection a year and a half later. Of course, there were uncounted CT and MRI scans plus 2 PET scans. I never knew what the statistics were because it didn’t matter to me and would just stress me and that is bad for the immune system. My mindset was to do every little thing possible to tilt the odds in my favor even as little as a percent or two, but that is a separate story. Some folks would say I was obsessed with not lying down. I did my crop scouting that summer during the last half of my chemo. When I had the recurrence, I tried to set a record for recovery. Six weeks after a chunk of my liver was removed, I went on a 32-mile bike ride, got there after the whole group had left, caught up with them and ended up finishing just after the first bunch came in. It was crazy and I know that now.
Somewhere along the way came the idea of paying society off as best possible by both living long and helping lots of people. The debt has been worked down some now. Amortized over ten years it is down to $35,000 a year and I ain’t done yet. The big problem for me is this. Good for me, that $350,000 worked and was arguably a good investment for society. But 93% of those with my diagnosis may have spent even more than me and did not make it. As a public policy maker and the beneficiary of a cancer reprieve today, it makes little sense to me to have a system which is spending so much with so little measurable benefit to so few. It is a puzzlement. If the $350,000 would not have been spent against the odds, I would have been a dead man. Yet there was very little there in the beginning that would have signaled I might survive - or even amount to a damn after going through what it took. The whole thing makes me both glad and sad.
The footnote is that I did not escape unscathed. I have neuropathy in both hands and feet. It is there every day, sometimes quite noticeable, others not so much. My gut is cantankerous and somewhat unpredictable and at times uncomfortable – probably from scar tissue or adhesions. I had some chemobrain in treatment and a few traces of that seem to persist. All that said, presence beats the heck out of oblivion.
My number of $350,000 above actually misleads. In manufacturing if you produced a product in which 19 of 20 failed completely, to stay in business you would have to cover the production cost of the failures as part of the pricing for the 1 in 20 that worked. In that case my success actually cost 19 X an estimate of $200,000 for the failures = $3.8 million + $350,000 for the one that worked. In reality I’m a $4,000,000 baby. From the producer end and survivor end what a sweet deal. It is almost like insurance without being insured. Or a lottery. You have a pool of people who get sick and contribute mightily to the overhead and all the expenses and then get one lucky winner in the end. For that kind of money and plus the greed fad operating in the US, is it any wonder cancer treatment costs are skyrocketing despite health care in the USA already being the most costly in the world?
So what is to do? First I would say enough already with dumping huge funds into research to find products for a cure. The foundational research still needs to be done if we ever are to have a cure. But honestly, what we have now is a succession of ever more costly drugs that incrementally increase survival time a month or two. That means that ten new anticancer drugs, if they each prolong thing 2 months as claimed, will almost certainly get patients no more than 18 extra months and then only if the get the latest greatest in the experimental stage when they first get ill. In light of the fact huge sums of research money have already been spent and we don’t have a cure and nothing on the horizon for a dramatic fix, then that says we are unlikely to gain significant ground in terms of new products in the near term. However we can continue to do basic research that may give us clues to products that are possibles. But presently the system mostly delivers hope, not breakthrough products. Of course there is some possibility of serendipity intervening with a discovery out of the blue. That has not happened and considering the amount of time and effort expended by standard research to date, it seems unlikely to happen. Perhaps taking another approach is warranted.
Here is the situation now. You get cancer kind of bad. We always have choices. One is to do nothing and that is almost near certain suicide with many cancers. Ruling out that option, then the really big outflow of money starts with little idea of what the likely outcome might be. That suggests we need to spend lots of money to develop tests or evaluations that predict the likely outcome before the patient gets any specific treatment. Basically, we need to discover why some still live and why others with the same prognosis and treatment die. That might be a lot easier to answer than finding a cure per se. It would also avoid the present situation where some folks at the start of the journey will get tortured, spend huge amounts and still die. If the doctor could look at them and say because of this and this and this indicated by this or that test or evaluation, you have less than a 10% chance of surviving for 3 months. Knowing that, it is up to the patient to decide the option. My suspicion is that many would elect to forego the torture and expense of treatment for palliative care.
On the other hand, a person like me might be told because of a, b, and c test and evaluation indicators, if treated, 75% of the time something besides cancer would kill me. Even then the patient might prefer no treatment. Or they might choose to be treated because the odds are more respectable. Such an approach has the potential of taking a major bite out of the economics of cancer. Instead of me being a $4 million dollar or more baby, 19 people will still die, but cost of all those deaths should be considerably less with a substantial reduction in human misery and crushed hope.
Today as an outlier survivor, it truly amazes me that no one has come to my door and said, Mr. Hannah, you are still alive and we want to work with you to figure out why so that we can spare other people prolonged misery with little likelihood of any life extension at all. Ten years ago no one told me that my chance of surviving 5 years was 7%. I might have lost hope and fight. But that is the point of what I suggest. Folks like me, if identifiable, might never be told their odds because of the negative psychological effect that would cause during treatment. On the other hand, perhaps the most merciful thing, if people with really bad odds could be identified, would be to send them home and tell them to gather their friends and family about them because their stay won’t be long. That would be much kinder than launching a desperate, painful, costly last-ditch survival effort in the face of overwhelming negative odds that only would prolong life a few months or weeks.
My hope is that my perspective as a person looking back on cancer (at least for the time being) has some value to you.
From Adam Kritzer:
I've had two cancer surgeries and one round of radiation therapy, and I'd like to share my perspective as it bears on your contention.
First of all, I agree with the thrust of your editorial, which is that considering the vast amount of money that has been spent on cancer research, improvements in survival time/ mortality are certainly disappointingly low. In addition, I think it makes sense to reduce routine screening (especially when such testing is either ineffective, or even counter-productive!) and advocate minimally invasive treatments, all else being equal. Finally, I think that it is only fair to call out large organizations that use half-truths, pathos, and fear-mongering to generate revenues/donations.
Unfortunately, I disagree with the rest of the article, and I think that you let the fact that you appear to have an ax to grind with science in general, cloud your judgment on this very complex issue. You seem to selectively reference studies that claim spuriously that without the decline in smoking, there would have not been any real decline in overall cancer mortality. (This is both true and untrue, but flagrantly glosses over a lot of nuance into the way these statistics are calculated).
Your attack on cancer research seemed to be grounded in dubious notions of utilitarianism and efficiency; do you really believe that because a treatment is expensive, it shouldn't be pursued/utilized? The implication that this would crowd-out other investment in cancer research seems to directly contradict your contention that cancer research spending is too high.
Finally, I think you are guilty of “throwing out the baby out with the bath-water;" because most cancer research doesn't generate quick cures and because many people work in the oncology "industry," therefore, we should distrust their motives and stop funding their research. How about simply suggesting that some cancer treatments are more effective than others rather than glibly arguing that the entire industry should be curtailed?
From my standpoint, your argument glosses over several key facts. First of all, cancer research is still very much in its infancy, and it will certainly take decades (or centuries) before it starts to show real promise. Second, treatments can be risky, but doing nothing can also be risky. Third, all doctors (nay, all humans!) are biased. In my experience as a cancer patient, most oncologists are inclined to recommend chemotherapy, radiation oncologists recommend radiation, and surgeons are inclined towards surgery. Last but not least, my personal experience is that it is more often the patients (due to a combination of naive optimism, fear, and ignorance) that demand aggressive treatments, and NOT their caregivers.
If I were writing this piece, I would have ended it by simply calling for greater honesty and transparency. The etiology of cancer is complicated, and we shouldn't expect a "magic pill" to be discovered anytime soon. If you are a caregiver, how about being truthful with your patients about the limitations and risks of current benefits, and being more conservative in recommending treatments in situations where the benefits aren't readily apparent? As patients, we need to develop reasonable expectations, do our own research, and ask our caregivers for more nuanced recommendations. And finally as humans, we should understand that cancer is probably going to become increasingly common (due to an increase in life span, unhealthy lifestyles, and inevitable exposure to carcinogens), and allocate social and financial capital accordingly.
From a reader in California:
I have a different take on the value of early screening for cancer and the subsequent treatments that follow the detection of cancer. My wife is a survivor of breast cancer, largely thanks to early detection by a mammogram. She then had 2 surgeries to remove cancerous tissue, which was found to be very aggressive, including the removal of some lymph nodes. Following this, she had radiation treatment and then chemotherapy. She also began a regimen of periodic estrogen-reducing tablets and annual infusions. The oncologist recognized that after her 3rd chemo treatment she was becoming very sick and omitted her fourth and final chemo treatment. She regularly sees the oncologist and is now cancer-free for over 6 years.
Her oncologist originally checked her progress every 4 months. Even though she shows no sign of cancer, she still goes in every 6 months. The oncologist also recently checked her DNA to see if she could go off of her estrogen reducing medication. My wife is a success story; without detection and treatment she would be dead. And, with one exception, all of the other women we know of who have been treated for breast cancer are long-term survivors.
We had another friend who survived her breast cancer treatments for a few years, but it eventually metastasized to her colon. She recently had part of her colon removed and was given a drug (I don't know the name or what it was supposed to do) as part of her treatment, but the drug made her weak. She reported her weakness by phone to her oncologist at the large institution who insisted that she continue taking it anyway. The oncologist did not examine her. Her weakness led to heart failure, and she died while her husband was holding her up so she could go to the bathroom. The oncologist later revealed to the family that the metastasized cancer would have led to her death within a year anyway. Neither she nor her husband had not been told that. Some doctors follow their patients more closely than others.
About the same time that my wife was being treated for breast cancer my dermatologist found a melanoma on my leg. He removed it and found that it was at a very early stage. I have been cancer-free ever since. The only downside is that I am no longer allowed to donate my O-negative blood. I am fortunate to have been diagnosed early because a former high-school classmate (and distant relative) had a melanoma on his leg which went undiagnosed for over a year. It was removed, but it metastasized, and cancer eventually killed him.
Your evidence is statistical while my evidence is anecdotal. I am willing to believe that the statistical evidence may be another case of correlation without causation.
From a colleague at Stevens who heard my talk, in which I said I had a hard time changing peoples’ minds about the value of tests for cancer:
In regard to the question of why it is so hard to change people's minds, I can think of two possibilities. One is that we are trained from a fairly young age to feel morally obligated to take care of regular medical "upkeep." There is a strong undercurrent in discussion of high-profile cancer cases (celebrities, etc.) that if you catch things early enough, you can "beat" the cancer before it takes hold. By extension, if you die of cancer, the implication is that this is kinda-sorta your fault, on some level, because you were naughty and didn't get your pap smear or whatever, and now your little children are left with no mommy, which for me is a much worse thought than actual death itself. So people might suspect on some level that you are right, and yet they can't risk it, because if they turn out to be one of the unlucky ones, then many lives could be wrecked (not just their own) and it is all the patient's fault, especially if it's one of these things which can theoretically be caught early.
Another reason why people probably don't like this argument is because it suggests that our fate is random, there's nothing we can really do about some of this stuff, and we just have to live with the knowledge of our own mortality in a way that we are not accustomed to being ok with.
There is also the possibility of a utilitarian argument here, though, which I personally do find somewhat compelling. Let's take the mammogram situation. If it's true that for every one woman saved, there are 10 who experience unnecessary suffering, then the reverse is also true: that for every 10 women who suffer unnecessarily, 1 is saved. In a way, then, testing becomes an ethical question: would you be willing to be in this pool of 11 people, 10 of whom will suffer unnecessarily, so that 1 can be saved from death? And to that question, I would probably answer yes.
From Karl Dahlke:
I believe universal healthcare is fiscally responsible, and a moral imperative, and decades overdue. However, a rational implementation of taxpayer funded healthcare would omit grossly expensive and barely effective treatments. I can just see the ads now, paid for by big pharma, and the resulting political pushback. "Sander's Medicare for All won't pay for my cancer treatment. He's leaving me to die, and there is no appeal process." Indeed, there is that 1 or 2 percent who would have been saved by said treatment. A statistician would make an expected value calculation, and determine funding accordingly, but the country is far from rational. I might be far from rational myself, if I were the cancer patient. You are a science journalist, not a politician, but I wonder, what is the answer to this dilemma? We need to know, before we put universal healthcare in place.
See also my free online book Mind-Body Problems.