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    "When many cures are offered for a disease, it means the disease is not curable" -Anton Chekhov

    ''Once you tell people there's a cure for something, the more likely they are to pressure doctors to prescribe it.''
    -Robert Ehrlich, drug advertising executive.

    "Opinions are like sphincters, everyone has one." - Chris Rangel

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    Sunday, July 29, 2007

    What Price, Hope? With a subtext that all would be well if we just had a set of universal treatment guidelines to follow and a bottomless pit of money with which to pay for that treatment, the New York Times presents this heartbreaking story of a young mother with metastatic colon cancer. This truly is a sad case, and one that falls outside the statistical norms of colon cancer, which is a rare disease to find in people in their thirties:

    Karen Pasqualetto had just given birth to her first child last July when doctors discovered she had colon cancer. She was only 35, and the disease had already spread to her liver. The months she had hoped to spend getting to know her new daughter were hijacked by illness, fear and a desperate quest to survive. For the past year, she and her relatives have felt lost, fending for themselves in a daunting medical landscape in which they struggle to make sense of conflicting advice as they race against time in hopes of saving her life.

    "It's patchwork, and frustrating that there's not one person taking care of me who I can look to as my champion," Ms. Pasqualetto said recently in a telephone interview from her home near Seattle. "I don’t feel I have a doctor who is looking out for my care. My oncologist is terrific, but he’s an oncologist. The surgeon seems terrific, but I found him through my own diligence. I have no confidence in the system."

    Actually, she did have doctors who were looking out for her, but she didn't like their advice. And who can blame her? She's been told that she has a terminal illness when she stands at the cusp of the best years of her life. Her first doctors told her that they could buy her time, but not cure her. And the rest of the article is about her quest for a cure. She chose to go with aggressive chemotherapy and possible surgical resection of the tumors that had spread to her liver:

    She chose an oncologist at the Swedish institute Dr. Philip Gold, who brushed aside her six-month death sentence and assured her that people with stage 4 colon cancer could live three to four times that long.

    “His message to me as a patient was, ‘I have a lot of tricks up my sleeve, this is what we start with, and if it doesn’t work I have this, and then I have a clinical study,’ ” Ms. Pasqualetto said. “The feeling I got was, there was hope, and a plan of attack.”

    Eleven months later, after 22 courses of treatment, she gave Dr. Gold credit for keeping her alive and giving her extra time with her daughter, Isabel.

    Except that the tumor board at the hospital felt that her liver tumors were too extensive to offer her any true benefit from their removal. In other words, they felt they would be selling her false hope by doing surgery. But, it's always possible to find someone who thinks he can help, if you have the ability and the will to find him:

    Her oncologist in Seattle hinted that it might be too late to operate, and that surgery could even make matters worse by spreading tumor cells around inside her body. She trusted him, and the thought of leaving his care frightened her.

    "It would almost be easier if there was somebody telling me what to do," she said. "But there’s nobody saying, 'This is what you should do.' "

    ...On June 17, a Sunday, Karen Pasqualetto, her husband and Isabel caught a red-eye flight to Baltimore. Ms. Pasqualetto made a point of bringing Isabel, 11 months, to her first appointment with Dr. Choti, hoping that the baby’s blue eyes and cheerful grin would remind him just how high the stakes were and inspire him to try even harder to save her.

    She emerged from the meeting a bit wistful. Though Dr. Choti had not criticized her previous care, he did say he would have operated much sooner, after a few months of chemotherapy.

    In an interview, Dr. Choti said that Ms. Pasqualetto was a borderline case because the liver tumors were so extensive, and he could understand why the doctors in Seattle had decided not to operate.

    She had the operation and the surgeon pronounced it a success:

    The day after surgery, Dr. Choti said, "I think we got away with quite a complex operation."

    The tumors were gone, but metastatic disease can be tough to beat in the long run.

    "Roughly a third of patients will remain cancer free for a long time," Dr. Choti said. "About half will still be alive after five years. In a minority, there's a long-term cure. In some, we turn it into a chronic disease, if you will. She may recur, and we might be able to reoperate. We can prolong survival significantly."

    The truth is, there are no long-term survivors of metastatic colon cancer. Surgery may prolong survival, but it doesn't cure it. The survival rate for this kind of surgery is 37% at five-years and 22% at ten years, though the short term survival in some circumstances is slightly better.

    But that survival comes at a price:

    Karen Pasqualetto is exceptional not only for her determination and confidence in dealing with problems that would intimidate many other people, but also for her financial wherewithal. So far her treatment has cost more than $400,000, almost all of it covered by health insurance from Starbucks, where her husband works in disaster-response planning.

    When she joined a cancer support group, she recalled, "It was amazing to me the different experiences people were having based on what they could afford or who their provider was. I was able to say, 'If the provider won’t pay, my family will. I don’t care, I’m going for a second opinion.'"

    In the support group, it saddened her to hear other patients with advanced disease take the word of a single oncologist, because she believes that if she had done that, she would already be dead. She has come to think that survival may depend on money and access, and, she said, on "your own drive and motivation — are you Type A? — your education and your ability to sort through the medical world and the insurance world terminology."

    Ms. Pasqualetto’s doctors have accepted her insurance payments, but if they had not, she said, "I would find resources. I would get people to pay. I do have resources. I have access to people who wouldn’t sit by and let me die because of $200,000."

    At what point do we tell people that we will no longer sell them hope? In this vignette, there have been a succession of doctors who drew the line at various points in the "maze" of treatment options - a maze, by the way, that the patient chose to enter of her own free will. They each had different levels of tolerance for the cost of treatment vs. the benefit. And not just in financial terms. There's an emotional cost to selling false hope to people, too. Time and energy that could be spent with family or putting affairs in order are instead spent on chasing down the latest "best" treatment and dealing with its consequences and side effects.

    It's never a good idea to base public policy on individual anecdotes. There will always be heartbreaking cases of illness that cry out for our empathy, but it would be fiscally impossible to pay for every possible treatment out there for every possible disease, especially treatment that is unproven. We've been down this road before, with bone marrow transplants for metastatic breast cancer. The treatment was widely publicized as a cure for breast cancer that was kept from patients only by the nefarious insurance companies. It turned out, the insurance companies were right, the treatment was ineffective.

    UPDATE: In the comments, Orac says I'm wrong about curing colon cancer that has metastasized to the liver. He considers a ten year survival a cure.

    UPDATE II: This letter to the editor makes the point succinctly and eloquently:

    To the Editor:

    It is important not to conflate two issues when emphasizing the difficulty cancer patients have in navigating their care.

    While it is indefensible that many patients are not offered standard care, the narrative of the young patient with metastatic colon cancer highlights a much different problem: the difficulty in choosing therapy when a situation is life-threatening and where the evidence is conflicting or nonexistent.

    The aggressive surgeon who removed 70 percent of the liver may appear the hero if the patient does well for a number of years, but the procedure will look ill conceived if she quickly has a recurrence and does not have enough liver reserve to tolerate further therapy, including agents just entering clinical trials.

    Similarly, while the second opinion is presented as a solution, how does a patient choose between discordant opinions given by different experts?

    posted by Sydney on 7/29/2007 11:58:00 AM 7 comments


    It’s real subtle but I gather from your post that, if my wife was in your care, you’d coldly announce to her that her life is over and she should spend what little time she has left getting her affairs in order. It’s hard for me to fathom that a practicing physician’s views would be so… simplistic. I really have to question your motives.

    I can’t really speak for how “rare” the situation is because it’s all too real for me. My 31 year old VERY healthy wife, Maggie, has Stage IV colon cancer, too. This story could have been written about her – 6 months to live, multiple liver mets, been told surgery is not an option – the whole bit. And you can bet your medical license that I’ll be doing everything I can to save her from from people like you.

    Every day new drugs are discovered. Two of the drugs that are helping Maggie stay healthy right now weren’t available just a couple of years ago. And there’re a lot more drugs coming soon (you should know this!) We will work hard to ensure that we stretch out her life for as long as possible to maybe, just maybe be around when that drug comes out that wins the battle.

    By Anonymous Chris Weaver, at 2:08 PM  

    Sigh. I knew this would happen.

    No, I wouldn't coldly tell your wife that "life is over," but I would explain the realistic chances of survival. It would then be her choice to pursue every last treatment option or not. That's a very individual choice. No one can make it for you.

    The point of the post is that you can't expect universal coverage of every last treatment option for every situation. The subtle subtext of the Times article was that if we had a single payer system with universal treatment guidelines everyone would have access to the kind of treatment this particular patient sought. That's not a realistic expectation. No matter how heartbreaking an individual situation is, public policy can't be based on individual cases. It has to be based on the evidence of what will do the most good with the least harm.

    It is rare for a young person to have colon cancer. That doesn't make it any less real for you and your wife, of course, but the fact that your wife has it at a young age also doesn't make it a common occurence among the population at large.

    And you are right about the technical advances that offer hope for the future. There's nothing wrong with choosing to go the path of longest possible survival, but it has to be done with realistic expectations.

    And the question remains. If we had a single payer system, just how much should we expect it to cover?

    By Blogger sydney, at 2:53 PM  

    It's plain just not true that there are no long-term survivors of colon cancer with metastases to the liver. There are "cures" in properly selected patients and at a rate that makes it not unreasonable to offer surgery to such patients. (Indeed, the very paper you cite contradicts your contention that there are no long term survivors or cures.) It's been pretty clear for a long time now that in patients whose liver metastases can be completely resected with negative margins there is about a 30-40% five year survival rate, with a little more than half surviving ten years. If that's not "long term survival," I don't know what is. Also, put it into perspective. What's the 5 and 10 year survival of colon cancer metastatic to the liver with only medical therapy? Very close to zero. True, most patients with liver metastases aren't candidates for surgery due to anatomy or too many metastases, but for those who are surgical candidates, the standard of care is to try to resect the metastases.

    Indeed, one thing that drives my surgical oncology colleagues who do liver surgery crazy is how often patients with resectable liver metastases from colorectal primaries are not referred to them until it is too late. In fact, this happened to the father of a very good friend of mine. When I learned that he had only two small liver metastases that were close to one another, I kept telling my friend that his father's only hope was surgery, but the oncologist kept giving him chemotherapy. He ultimately did undergo surgery, but only after he had more and bigger metastases, and now he's incurable. Would earlier surgery have made a difference? We'll never know, given that 60-70% of successfully resected patients still recur and die within 5 years, but certainly delay didn't help.

    That being said, I tend to agree that this unfortunate woman was a very poor candidate for an attempted curative resection and was pretty ticked off when I first read the article and the characterization of the tumor board. The very purpose of a tumor board is to put together all disciplines involved in a patient's care and come to a consensus about the best treatment approach. It sounds as though she had very bulky liver disease and that the decision not to operate was probably the correct one. Chances are, she'll recur fairly rapidly after her surgery, given the bulk of her disease and the fact that the surgeon obviously found other tumor deposits, given that the article describes him removing sections of small intestine. Dr. Choti's estimate of her chances is almost delusionally optimistic.

    By Blogger Orac, at 3:53 PM  

    I wish the Times article listed more resources for folks with cancer, who desperately need advocates to work on their behalf through the maze of treatment options. I am a supporter of the Charles Moriarty Foundation (http://www.charlesmoriartyfoundation.org/) which provides advocacy services on behalf of people with cancer. There have to be more organizations like this throughout the country! Wish the NY times had published more resources like this...

    By Anonymous Anonymous, at 11:36 PM  

    Being "that unfortunate woman" .. I guess time will tell. By the way, there was a primary colon tumor in the transverse colon that was removed. I did not have a portion of my small intestine removed!
    I will continue to fight hard. I will make decisions for receiving care I see fit.
    I'll take "delusionally optimistic" anyday - because the power of my mind will also make a difference.


    By Anonymous Anonymous, at 12:45 PM  

    The facts are that, when we get into treatments with poor outcomes at high cost, there is no right answer. Consensus is a means to recommend the best treatment for the population at large- once a patient rejects this advice, which they have the right to do, it's an ethical free-for-all.

    Remember, if agressive treatment is followed for all cancers like this, one is more likely to see articles written by patients whose agressive treatments didn't work, and who express dismay at the treatment ruining the quality of their last few precious months. This, more than "wasting" resources, is what I suspect the tumor board & treatment guidelines are trying to prevent.

    I have a physician friend who went to (probably) the same group in Seattle for metastatic colon cancer. He had a partial liver resection, and it's been well over 5 years now. We don't live in Washington and I don't think his insurance covered much because he was out-of-network. He's alive because of his education, perseverance, and financial resources.

    Modern medical ethics has not come up with any better solution for rationing medical care. Everytime it tries, it fails. Even using clinical criteria (as in this case) there will be exceptions to the rule. Wealth, education, determination... these are all random when it comes right down to it.

    There aren't enough resources to go around- even if everyone wanted aggressive treatment- which they don't. Every method will discriminate against someone- better to leave it to fate than an ethics committee.

    By Anonymous anon this time, at 3:17 PM  

    Surgery is an integral part of the multimodality treatment of colon and many other cancers. The removal of large masses likely to be associated with poorly vascularized areas of tumor improves the probability of delivering adequate drug doses to the remaining cancer cells, while the removal of bulky disease enhances the immune system.

    Surgical skill, both the technical aspect and the intellectual aspect, are critically important. But even the best of surgeons can do a complete and thorough dissection and the tumor still comes back, or occurs distally. There is so much about the disease process that is not understood. A complete resection may be done, even with poor surgical technique, and the patient does well.

    There is a complex interaction between the tumor, its stage, its location, size, biochemical/genetic makeup, and sometimes the surgeon actually has little to do with it. Modern medicine in general and cancer treatment in particular, is very imperfect. In the hopes of curing disease or helping patients, the medical profession uses rather drastic treatments for devastating diseases they know may kill someone in a short time.

    In an ideal world, patients would consider the benefits and the risks of each modality of treatment and make an informed decision with the guidance of a wise doctor. But hurried doctors seldom spend much time discussing the benefits and the risks and few patients ever question whether treatment may do more harm than good.

    It would be ideal if more people researched their disease and its treatment before the treatments were administered, but we usually don't have the luxury of time to learn what the oncologists are not telling us when it matters most. It is scary when we try to give oncologists the benefits of doing what needs to be done but we have to learn to ask more questions and seek more answers.

    By Blogger Greg Pawelski, at 2:38 AM  

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