Confusion due to cancer care choices

Saturday, I thought that I knew what I’d be writing about for Monday, which, I’ve learned from my two and a half years of blogging, is a great thing when it happens. A certain Libertarian comic had decided that he wanted to argue some more about secondhand smoke and indoor smoking bans, starting a few days earlier with a rather specious analogy (which was handily shredded by you, my readers) and then finishing by annoying me with a comment and a post that implied that I didn’t “care about the little guy.” It looked like great fodder for a post to start out the week and a chance to apply a little Respectful Insolence™ to someone who clearly wanted a heapin’ helping, as opposed to the previously administered taste.

Then I read the New York Times yesterday and saw this article (Cancer Patients, Lost in a Maze of Uneven Care) on the front page. Given that cancer is my primary area of interest and this article touches on a number of important problems with our nation’s system of cancer care, I decided that sparring over secondhand smoke could wait another day or two . (Feel free to visit our favorite Libertarian comic in the meantime and see what annoyed me–and no, it wasn’t the Photoshopped Orac picture, which was actually somewhat amusing.) There’ll be time to come back to that “discussion.” Besides, having an influx of smoking cranks descend upon the blog is something I look forward to about as much as a root canal; so deciding to delay my response a day or two didn’t take much contemplation.

The article in question starts out by telling a truly sad story about a 35 year-old woman who, after giving birth, was diagnosed with Stage IV colon cancer as the human interest to represent a systemic problem with cancer care in this country:

The first doctor gave her six months to live. The second and third said chemotherapy would buy more time, but surgery would not. A fourth offered to operate.

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.”

Ms. Pasqualetto’s heart rending case is unusual, because colon cancer is fairly uncommon in people under 50, unless they have genetic conditions that predispose them to develop the disease. The circumstances of its diagnosis, where instead of discovering the joys of being a new mother she must now battle for her life, make her case that much more tragic. However, as uncommon as it is, I have come across cases of colon cancer in patients in their 30’s often enough to know that it can happen. Several months ago, I remember being called while on call to see a 36 year-old with known metastatic colon cancer who had developed a bowel obstruction. Examining him, I found large, palpable abdominal wall masses that were rock hard. This meant that there was no way I could get into his abdomen safely, and I had to tell him there was nothing that I could do.

Despite the tone of this article, I would like to start by pointing out that doctors really, really hate having to tell a patient that there is nothing we can do.

Given Ms. Pasqualetto’s shock at her diagnosis, it’s understandable that she would feel that the system doesn’t work. Certainly, this article brings out two big problem with the system, the disparities in quality in cancer care and (as always) problems with insurance coverage for such care, as will be discussed below. However, the way in which her story is presented is so laden with emotion and some assumptions about Ms. Pasqualetto’s quest for a cure that are not completely reality-based. Indeed, Ms. Pasqualetto is a very poor example to use to discuss disparities in basic cancer care, which seemed to be the main focus of the article, and, more than that, there are also a couple of maddening things about this article that made me want to rip it up at one point. More on that later. in the meantime, here’s how Ms. Pasqualetto was diagnosed:

After giving birth by Caesarean section last July, she noticed a lump under her ribs. It was the size and shape of a banana. Doctors noticed it but did nothing. She was sent home and was told it was probably a bruise. Within a week she was back in the hospital, terribly ill — swollen with fluid, vomiting, so anemic she needed a transfusion and suffering from severe abdominal pain. Tests found colon cancer that had already spread, or metastasized, to her liver — stage 4, the final chapter of the disease.

“The doctor came in with a tear in his eye,” she recalled. ” ‘It’s bad.’ Those were his exact words. ‘You have maybe six months.’ “

As I have written before, the survival for metastatic colon cancer has improved dramatically. Where it used to be six months, median survival is now in the 14-20 month range with newer and more effective chemotherapy regimens; so I’m guessing that the physician who told her this was probably not an oncologist. This is exactly the sort of thing that doctors say far too often that feeds into the altie stereotype of “they just sent me home to die,” even when such is not the case. (The same stereotype is at work here, just without a testimonial in which Ms. Pasqualetto turned to quackery.) Misunderstandings don’t help, either:

Surgery was not recommended because the liver tumors were too extensive. She was referred to an oncologist, who offered “palliative” chemotherapy, given strictly to ease symptoms, not to try for a cure.

“His attitude was that it wouldn’t really make a difference,” Ms. Pasqualetto said.

Here’s the misunderstanding. For stage IV colon cancer, unless the metastatic disease is confined to the liver and/or lung alone and can be completely resected surgically with no evidence of tumor left behind, every therapy offered will be almost by definition palliative. Period. We can slow the progression of inoperable stage IV colorectal cancer, and we can relieve symptoms related to its progression, but we can’t cure it. Thus, when it was stated in the article that Ms. Pasqualetto’s insurance company would only pay for “palliative” care, that is not necessarily a reasonable indictment of the insurance company. As a physician, trust me when I say that I detest most health insurance companies and have pulled a few rather interesting moves on occasion to get them to cover certain tests for my patients, but in this case there is just not enough information to know whether Ms. Pasqualetto’s insurance company was being too stingy in its coverage or not. Reading between the lines, my guess is that it probably only covered the FOLFOX regimen, which is pretty much standard of care for stage IV colon cancer, but did not cover the latest antiangiogenic drug Avastin, which when added to FOLFOX can increase median survival but is very, very expensive. Regardless, even these new combination therapies are still not cures, at least not by themselves. They are still palliative.

Telling a young patient that she has incurable cancer is one of the hardest things oncologists sometimes have to do. The key is not to give the patient the impression that you’ve given up or that you don’t care, and It may be that her first oncologist failed at that. Or it may be that Ms. Pasqualetto just wasn’t ready to accept the hard truth yet, which is completely understandable but is also a common problem that oncologists need to know how to overcome. All of this combines with the very real problem described in the article, inconsistency of care among institutions and geographically, to make decisions even more difficult. If a newly diagnosed cancer patient goes for a second opinion, there is a pretty good chance that it won’t agree with the first opinion:

Even when treatment guidelines are based on solid evidence, hospitals or doctors may not stick to them. But sometimes, the science is not clear, and experts do not agree on the best course — or even on whether there is a best course.

“In cancer, there is frequently no one best doctor and no one best treatment,” said Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania.

When patients consult him for second opinions or to transfer their care to his center, Dr. Glick estimated that he and his colleagues concur completely with the original doctor in about 30 percent of cases. But in another 30 to 40 percent of cases, they recommend major changes in the treatment plan, like a totally different chemotherapy regimen or the addition of radiation. Sometimes his team makes a completely different diagnosis.

In about another 30 percent of cases, his team recommends minor changes in chemotherapy, or additional tests. “We interpret things differently, maybe because we have more experience,” Dr. Glick said. “We see hundreds of patients with Hodgkin’s disease. A community oncologist may see only a couple.”

What does a cancer patient do if faced with two, three, or even four different recommendations? One thing that came out of this article shocked me. Maybe it’s because I’m in the “ivory tower” of academia and can’t imagine that it wouldn’t be incredibly obvious what to do, but apparently there are a not inconsiderable number of women who undergo lumpectomies for breast cancer who don’t get the recommended adjuvant radiation therapy (15-25%) and patients with colon cancer that’s spread to regional lymph nodes who don’t get adjuvant chemotherapy. However, I’m not so isolated that I don’t know that some strange things go on out there. In the last eight years, I’ve had at least three patients come for a second opinion after a mastectomy was recommended for a small breast cancer, for example. Not too long ago, I was a visiting professor at a tumor board, where one of the cases presented so shocked me that I actually forgot decorum a bit and publicly interrogated the surgeon about what his rationale was for doing what he did. (In fairness, one of the oncologists came up to me afterward, embarrassed, and told me that they knew they had a problem with this surgeon.) Evidence-based guidelines are one way to try to address this problem. In making these points, this article does a service to the public. In using Ms. Pasqualetto, whose case is anything but simple and would be prone to multiple conflicting recommendations even in a world where the disparities that this article sought to highlight didn’t exist, as the exemplar of this problem, the NYT went for sympathy over substance.

Unfortunately, the article takes it beyond that. The rest of it is couched as a quest by Ms. Pasqualetto to find a doctor willing to try to save her life. She found one who was willing to give her aggressive chemotherapy in hopes of shrinking her liver metastases to the point where she became operable, a perfectly reasonable approach in a patient this young. Then we get to the point where this article completely misrepresented a common forum where cancer therapy is discussed and decided, the tumor board:

One aspect of Karen Pasqualetto’s care has particularly troubled her. She was told that the first few months of chemotherapy had shrunk the liver tumors enough to make them operable, and surgery was scheduled for last January. She was elated, figuring that removal of the tumors was her best shot at staying alive. But in December a hospital review panel known as the tumor board refused to approve the surgery.

“I was adamantly told it was off the table, and I don’t know why,” Ms. Pasqualetto said. Even she, the feisty patient, felt powerless.

“Who is this tumor board, and do they hold the keys to my life?” she asked.

“You feel a total lack of control when you’re in a position like mine,” she said.

Her oncologist, Dr. Gold, who is chairman of the tumor board, said it was a group of doctors who met informally to review cases and decide what treatment would help a patient most. In Ms. Pasqualetto’s case, the board thought chemotherapy would accomplish more than surgery.

“Patients don’t always hear what you’re telling them,” Dr. Gold said.

While I can understand why Ms. Pasqualetto would feel that way, the NYT, by presenting the story this way, gives the impression of a monolithic, uncaring committee that doesn’t want to save her life. (Yes, this is the part of the article, where I almost ripped up the newspaper.) Basically, a tumor board is a group of doctors involved in the care of cancer who get together on a regular basis to discuss cases. Depending upon the hospital, they can range from very formal to more informal, but they are generally made up of medical oncologists, radiation oncologists, surgeons, and pathologists, often with nurses, social workers, and genetic counselors also in attendance. The idea is to present and discuss cases, particularly difficult cases like Ms. Pasqualetto’s, in a multidisciplinary manner to decide what the committee thinks is the best course of action for the patients whose cases are presented. Usually, there are multiple members who are involved in each case; so it’s not as though the members don’t care. Tumor boards, in my experience, are great resources to help out with difficult cases, as Ms. Pasqualetto’s clearly was. I can fully understand why Ms. Pasqualetto was not pleased with the tumor board’s recommendation, but for the reporter to present her characterization of a tumor board stand without a better explanation of what a tumor board is and does is this article’s weakest (and most infuriating) point. Personally, from what I can tell from the case in this story, the tumor board’s recommendation was probably a sound recommendation.

The final phase of the story was presented as a triumph over the system, although I’m not necessarily sure that it was. Ms. Pasqualetto found a surgeon willing to attempt to operate, Dr. Michael Choti at Johns Hopkins, a very aggressive surgeon. Now don’t get me wrong. If there’s one thing about colorectal cancer that’s metastatic to only the liver, it’s been pretty clear for a long time now that in patients whose metastases can be completely resected with negative margins there is about a 30-40% five year survival 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. The question that requires a lot of clinical judgment to decide is: Which is which? Indeed, one thing that drives my surgical oncology colleagues who do liver surgery crazy is how often patients with potentially resectable liver metastases from colorectal primary tumors are not referred to them until it is too late and the decision has in essence been made by the disease.

Here’s what Dr. Choti had to deal with, from two CT slices included in the article:

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CT scans are viewed as “slices” seen from the patient’s feet. Consequently, the left part of the pictures above are the patient’s right side. The dark masses in the brighter area (the liver “lights up” on CT scans because of intravenous contrast) are her two tumors. One (the more defined, circular one) appears to be in the right lobe in the dome of the liver, while the other, much larger and less distinct one, in the other photo is primarily in the left lobe. This is a huge surgical challenge to remove both of these and still leave enough liver for Ms. Pasqualetto to survive until it could regenerate.) Truly, Dr. Choti is a studly surgeon indeed to have pulled this off. However, it remains unlikely that he saved Ms. Pasqualetto’s life and debatable whether he prolonged it significantly:

“They got them all,” Ms. Pasqualetto’s husband, Chris Hartinger, said shortly after her operation ended on June 21. “It turned out to be five tumors.”

Four were in her liver. The one in her colon was the size of a tangerine. Dr. Choti operated for eight hours, removing 12 to 18 inches of intestine and about 70 percent of her liver.

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.

Indeed, it can be, particularly given that Ms. Pasqualetto clearly had extensive disease. Dr. Choti’s tour de force operation notwithstanding, she almost certainly has residual microscopic disease that will blossom into mestastases again. This operation was pushing the envelope, and there isn’t really a lot of good evidence to tell us whether such massive operations truly prolong life. It’s something that’s argued about at the Society of Surgical Oncology meeting pretty much every year. The question is whether the apparent prolongation of life observed in patients who undergo such operations is a case of selection bias, where patients who are in good enough shape to undergo the surgery and whose tumors are indolent enough not to grow out of control before they come to surgery would be likely to do better no matter what treatment is given, or whether there is a true treatment effect. In other words, Is the apparent survival advantage due to selecting the best patients for surgery rather than due to the surgery itself. The problem is, there’s no real practical or ethical way to do a randomized trial to answer the question; so lesser studies are what we have to base our decisions on. The answer to that question is clear in patients who have small amounts of metastatic disease that can be completely resected, in which case surgery clearly prolongs survival and even cures some patients, but it’s not so clear when it comes to large amounts of metastatic disease and disease outside of the liver. Again, such huge operations are pushing the limits of surgery and evidence-based medicine.

There is no doubt that Ms. Pasqualetto is a remarkable woman, and I certainly hope that she beats the long odds against her. However, she’s an exceedingly poor example for the NYT to have used as a poster child to highlight the disparities in the quality of cancer care in this nation. Remember, the disparities being addressed by the guidelines described in this article are among cancer patients who do not receive care that is clearly overwhelmingly supported by scientific and clinical evidence as being efficacious. We’re talking about women with breast cancer who don’t get radiation after their lumpectomies or don’t get anti-estrogen drugs after surgery even though their tumors are estrogen-responsive. We’re talking about patients with potentially resectable pancreatic cancer, only 38% of whom are ever offered operations. We’re talking about patients with node-positive colon cancer who are not offered adjuvant chemotherapy. These are very basic things that patients should be but all too frequently are not offered. They’re Oncology 101. In contrast, Ms. Pasqualetto’s case is anything but simple. Leaving aside the issues with health insurance and getting third party payers to cover her treatment, Ms. Pasqualetto’s borderline operability puts her at the very edges of evidence-based medicine, where it is not at all clear what is the best treatment for her. There are several defensible treatment recommendations that could be appropriate, ranging from a purely palliative minimalist approach (which some patients opt for, by the way) to the über-aggressive attempt at cure that she ultimately did opt for, and many options in between. In other words, she’s an outlier, not the “typical” patient who is not getting basic, bread and butter, standard of care treatment for common cancers, which seemed to be the point of this article.

In a perfect system where cancer treatment didn’t vary so much from center to center, I would go so far as to say that Ms. Pasqualetto might not have been able to find a surgeon who would have been willing to try to operate on her, as most guidelines would say that doing a resection of four liver metastases and a colon recurrence has such a low probability of saving her life and such a high probability of significant morbidity or mortality that it would, in general, not be the recommended. It’s the variability in surgical approaches to widespread liver metastases that meant that there was a surgeon out there who would be aggressive and skillful enough to be willing to give it a shot and operate on her. That’s the biggest irony of the article.

Human interest anecdotes designed to make a point should actually make that point, rather than be discordant with the message. It would have made far more sense to find a woman with breast cancer who had a lumpectomy but no radiation or who didn’t get Tamoxifen even though it was indicated and then recurred than it was to use a patient whose management is not so clearcut and whose likelihood of dying regardless of what is done is so high. The message, namely that there are disparities in basic cancer care that need to be addressed, was a good one, but the messenger botched it by confusing basic care with complex care.