Respectful Insolence

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:

i-5494e67ed4f7fa287297928c85f6e1ed-cancerleft650.jpg
i-8f7e57c471fefe5b7a949d94289f622f-cancerright650.jpg

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.

Comments

  1. #1 David D.G.
    July 30, 2007

    This is a fascinating and enlightening piece, Orac. Thank you for writing it.

    A friend of mine in her early 40s is just about to begin chemotherapy as a followup to double mastectomy after an early discovery of breast cancer. She has a strong family history of cancer (both parents died of some sort of cancer, and she even had a sister who died of some sort of cancer in her 20s), but with the early discovery, the quick and thorough surgery, and the type of chemotherapy regimen planned, she has been given favorable odds for beating it completely.

    I appreciate getting this look inside the professional end of dealing with this insidious class of disease. Thanks again.

    ~David D.G.

  2. #2 Melissa G
    July 30, 2007

    Orac, I really wish you would send this blog post as a letter to the NY Times. You make some vital points about cancer care that the Times did the public a disservice by not addressing. I would go so far as to say they botched up this aspect of the article, and you should let them know it.

  3. #3 spudbeach
    July 30, 2007

    Ah, a classic example of a basic problem in modern medicine: everybody wants quality care, but very few people know quality care when they see it.

  4. #4 isles
    July 30, 2007

    I just got around to reading that article this morning and wondered if you would have something to say about it. There are a lot of parallels to the alt-med world. Can’t say I blame Ms. Pasqualetti for trying everything, given her circumstances, but as you note, it’s unfortunate that her story was cast as a failure of the system.

  5. #5 Joe
    July 30, 2007

    Yes. One of your best posts.

  6. #6 Karen P
    July 30, 2007

    Though I am sure you are an expert and you are certainly entitled to your expert opinion you ought to confirm facts before posting opinions based upon some assumptions. There was a failure of the system for me in the case of the first hmo/doc telling me he wouldn’t even bother with chemo and to figure out where to spend the remaining months of my life. For me, being the subject of the article and not the journalist, my goal is to get people to be more aware of their options and their own bodies – knowing what’s going on, paying attention to warning signs and pushing for better answers.

    I will be happy to enjoy extra months with my daughter and take any extra time that the surgery bought me. One extra year is worth it to me. It is the same for every cancer patient I know.

    I have much more to say about your post. Perhaps be courageous and don’t post on blogs but speak out in a more public forum if you feel so confident about your expert opinion. Truth is, there are no hard answers and you do NOT have a crystal ball.

    Karen

  7. #7 sailor
    July 30, 2007

    Orac, I thought of you when I read the original article and am happy to read your comments.
    Karen P thanks for coming here and posting. I would agree that there was a failure of the system with the first doc telling you he wouldn’t even bother with chemo. You should have, at the very least, been given the full range of options and probable outcomes. I can only hope this was not a policy coming from an HMO.
    We really do appreciate Orac’s blog and gain knowledge from it. Sometimes, it must seem a little skewed because sometimes his source of material is, like here, a newpaper article which never tells the whole story. However, for those of not directly involved, both story and comment have value as a point of discussion.
    Having good friends who have to deal with cancer, I for one realize it is not always clear, even when you are given the options, what the best course of action is. This even after you have a whole group research the net for information.
    You clearly have a lot to live for and lot of pluck and detirmination to do it, and are doing everything you can. I wish you the best of luck and truly hope you live to see your kids grow up.

  8. #8 Betsy de Parry
    July 30, 2007

    I am glad that the NY Times continues to expose the variation in cancer treatment that unfortunately exists in this country. A couple of weeks ago, the same newspaper published another article entitled, “Two Lymphoma Drugs Go Unused and Backers Cite Market Forces” which exposed the fact that doctors aren’t using a new and better treatment because they don’t get paid for it. If you didn’t read it, here’s the link:

    http://www.nytimes.com/2007/07/14/health/14lymphoma.html?em&ex=1184731200&en=2c56549167f170c5&ei=5070

    I am one of the patients cited in the article, and I assure you that it is unlikely I would be alive today had my doctor failed to prescribe this therapy. It was newly approved at the time, and another doctor told me that because my disease had resisted everything else, I probably had only about 6 months to live even if the new therapy were administered. That was 5 years ago, and today I remain disease free.

    I can also tell you that the article took a very conservative approach in its reporting. The reporter could have included patients who have been disease free for years longer that the three he chose. He could have cited clinical trials which have shown more promising results than the ones he chose. But he made the real point clear: because doctors have no financial incentive to use these new drugs, they have reached only about 10% of the patients who might benefit from them. I invite you weigh in on this one.

    I understand that treating cancer is sometimes as much an art as a science, but where would Karen Pasqualetto be if she were not her own best advocate? And where will all the other Karens be who aren’t as capable of leaving no stone unturned? Are we to rely on a medical community which does, in fact, vary in its opinions and which occasionally recommends treatments based on financial incentives? I don’t think so.

  9. #9 Sid Schwab
    July 30, 2007

    I read the article yesterday and considered writing about it in my blog. As usual you have done a very comprehensive job of addressing the issues raised, making any take I’d have on it pretty thin soup, by comparison. Like you, as a general concept I find it amazing that there are physicians out there who seem unaware of the most basic protocols; and that is consistent with at least one point of the article: that quality of care varies more than it ought from place to place. And no matter how well worked out certain protocols are, I suppose there always ought to be room for individual variation.

    The same NYT issue also had an editorial on the failings of the fee-for-service model of physician reimbursement. Maybe I’ll consider taking that one on…

  10. #10 Sid Schwab
    July 30, 2007

    I might add, apropos the comment above mine, that in a non fee for service model, Karen might well have had less chance of having her surgery!

  11. #11 me
    July 30, 2007

    Among the many unwelcome burdens placed on a new CA patient is the troubling uncertainty revolving around their caregiver decision. Have they put themselves in the hands of someone who gives them the best possible chance at living longer?

    I suppose as a general rule you could say, “Well, if you have a routine, uncomplicated cancer, you could do as well in a community care setting as you could anywhere else.”

    But then how do you know if your cancer is routine…or uncomplicated.

    It shouldn’t be like the lottery, and for the most part it isn’t like the lottery….but when you are sitting in a clinic waiting room with fellow CA patients, its hard not to have a lottery mentality, to work the numbers in your own mind and wonder of the 20 or so of us sitting here, which few of us have grabbed the brass ring (and just don’t know it yet).

  12. #12 sailor
    July 30, 2007

    “I might add, apropos the comment above mine, that in a non fee for service model, Karen might well have had less chance of having her surgery!”

    Sid, one thing that drives me a bit nuts is some of the medical/pharma implying somewhow treatment will go to pot if there is a national health scheme.

    Yes, there will be some sort of rationing and control in a single payer system. It would not be feasable otherwise. And in this case I agree it is likely surgury would not have been covered. However, it is unthinkable in free market USA that if there is a single payer system it will be the ONLY medical care available. I imagine all kinds of insurance plans will be available to those who can afford them and for those that now can afford good insurance, they will likely be able to get equally good coverage regardless. Certainly in the UK, the national Health Service works and is basic, if you want better you can pay for insurance.

  13. #13 Karl Schwartz
    July 30, 2007

    Dear Orac, You’ve covered a lot of territory, skillfully as per usual. Many thanks for that.

    One terrible aspect of the diagnosis of a cancer is the loss of control. As you put it, “the decision has in essence been made by the disease.”

    Do you think the patient should be invited to participate in at least part of a tumor board hearing in some cases? Is this already done?

    This would allow the committee to judge if the patient’s desired approach (palliative versus curative intent) is relatively informed and rationale. It may be that the patient’s physician is not always an adequate surrogate for his or her patient in this regard, or in conveying the general health and vitality of the patient to the committee. With participation the patient is given back some autonomy, or at least a voice. I think the patient’s wishes deserve to be heard, particularly in cases that are on the “boundary of evidence-based medicine.”

  14. #14 plunge
    July 30, 2007

    With all due respect Karen, I don’t think you read the article were closely. One person is not the system, and one result: particularly when we still don’t know what the result will be, is not a statistic. It’s not clear at all whether surgery is the right choice in a case like yours. You decided that it was, and that is your right: to seek out the treatment you think is best. But that doesn’t mean that cases like yours are magically easy calls for doctors or that aggressive untested surgery is what should be prescribed in every case. I hope your choice of treatment is successful, but that still doesn’t mean that your case is a good example of a breakdown in the system.

  15. #15 Dangerous Bacon
    July 30, 2007

    The NYT story repeats the commonly heard anecdote about the (presumably ignorant or uncaring) physician who tells a patient that “you’ve got X months to live”.

    Does this happen in the real world, or is the true situation that the patient wants to know about life expectancy and the physician says something like “The average survival for someone with Stage Y malignancy like yours is X months.”

    The former statement is inaccurate on the face of it (many people will live a longer or shorter time than the “average” survival period) and I wonder how often physicians actually use this phraseology (it is also a favorite stereotype used by alt medders, who then go on to relate how a Wonder Herb or parasite Zapper allowed the victim of “allopathic” medicine to beat the odds).

  16. #16 Sid Schwab
    July 30, 2007

    sailor: I’m not sure we really disagree much. You could search my blog for the two posts called “my solution” and see. As regards the above, I made a statement with which you seem to agree. I made no implication about going to pot.

  17. #17 Karen P
    July 30, 2007

    Well Dangerous Bacon – – It was no anecdote for me! I did not solicit information as to my life expectancy, it was offered when they discovered the cause of my suffering. This was after a blood transfusion and many other attempts to keep me as healthy as possible while they tried to find the primary source of the cancer that was showing up as masses in the liver.

    I have been to many many support groups and in sharing personal, intimate moments with people suffering from this very real disease, it has been my first-hand experience that many people have been given a determined amount of time to live – – UNSOLICITED.

    I wonder if you folks live in the real world as a cancer patient or merely observers of what you perceive others to be experiencing?

    I am insulted by much of what is said here. Everything said in the article was based on fact. My position is/was not unique and DOES represent a majority of cancer patients whom I have met.

    The disease has no easy answers nor clear cut right or wrongs in many cases. Do you think it makes sense to not perform a colonoscopy on a 32 year old who has blood in her stools? When it persists for a week and is consistent with indications of bleeding in the colon? What if the test showed nothing – – would it have been a waste of time and money? Probably not. It would have been a great prophylactic measure. At the time I was with a very large HMO who is known for great middle-of-the-road care. Hey – not unlike SOCIALIZED MEDICINE! I think its the same in those places like Sweden or Canada!

    Until I got with a provider where we pay extra for the ability to not have to be in-network was I assured I would get the best care available and make my OWN DECISIONS ABOUT MY OWN CARE. Clearly – the most important point. Its my body, my life and I want to CHOOSE my own care – – not have it dictated by ANYONE else.

    I’d love to hear opinions from someone who is in my shoes or has experienced what I have experienced rather than opinions from the outside.

    Karen

  18. #18 Orac
    July 30, 2007

    There was a failure of the system for me in the case of the first hmo/doc telling me he wouldn’t even bother with chemo and to figure out where to spend the remaining months of my life.

    With all due sympathy for your condition and respect for your fight, this is what the article said about this issue:

    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.

    If that’s not what happened, then your beef, at least with respect to this one small issue, is with the newspaper reporter, not me. I have no way of knowing whether the representation of what happened is not correct, particularly when a direct quote by you is used to support it.

    Personally, I would agree that for a person in her 30s that’s too nihilistic. If you were 30 years or more older or not in good health, I’d say palliative chemotherapy is a very reasonable recommendation. Ditto if that were your preference (and it is the preference of some patients).

    Here’s the problem with the article, and I hope you can understand why I might feel this way about it. It’s schizophrenic. While you might be a good patient to discuss in terms of problems getting insurance to cover aggressive or radical procedures (and, make no mistake, Dr. Choti’s operation was indeed aggressive and radical, as I’m sure you realize), yours is not a good representative case for what was represented as the main point of the article: How too many cancer patients are not getting the basic standard of care, such as women with breast cancer not getting radiation after a lumpectomy. Your situation is neither basic nor simple. There are several strategies to treat you that are defensible based on the evidence, ranging from the purely palliative approach to the highly aggressive approach. Obviously, some of this depends on patient preference and how aggressive a patient wants to be. What you ultimately got done, while within the standard of care, did, as I pointed out, push the envelope of surgery and evidence-based medicine.

    Indeed, in almost any system that I can imagine, even one in which all the disparities in basic cancer care disappeared overnight, how to deal with a patient as complex as you will always produce disagreements among highly competent oncologists and surgeons. That’s because reasonable evidence can be marshaled in support of a range of therapies ranging from palliation alone to the very aggressive attempts at a cure. Moreover, I don’t think it’s unfair to point out that it is in essence the same sort of variability in cancer care that causes problems with some patients with straightforward cancer presentations getting substandard care is the same variability that ultimately allowed you to find a surgeon who was willing to undertake such a huge and risky operation with the very real potential of causing more harm than good. Nor was it unfair of Sid to point out that one of the often proposed solutions to the problem of insurance coverage for such procedures (a single payer system, for instance, or guidelines enforced by insurance carriers) do run the real risk of actually making it less likely that patients like you could get such operations.

    None of this is in any way meant to denigrate your struggle. Everyone here, I daresay, hopes that you are one of the fortunate ones who truly benefits from such an aggressive approach to the point that you are alive at least 5 years from now. It’s possible to hope the best for you and still come to the conclusion that your case wasn’t the best choice to use to illustrate the disparities in basic cancer care that the guidelines described by Dr. Edge are meant as a first step to address.

  19. #19 sailor
    July 31, 2007

    “sailor: I’m not sure we really disagree much. You could search my blog for the two posts called “my solution” and see. As regards the above, I made a statement with which you seem to agree. I made no implication about going to pot.” Sid

    “Nor was it unfair of Sid to point out that one of the often proposed solutions to the problem of insurance coverage for such procedures (a single payer system, for instance, or guidelines enforced by insurance carriers) do run the real risk of actually making it less likely that patients like you could get such operations.”

    Sid, I looked at your web site and we could probably find a lot to agree on. And as you noted I agreed with you on the point you made. Any national health care system will be (and should be) rationed.

    My objection is (and you will see much of this come up on paid-for ads if a national health scheme threaten to become a reality) the way this is presented.

    We are told that the current health system is among the best in the world for those that can afford it. This is true. You will be told that under a national scheme the health care will not be as good as it is now. This is true only for those that are going to rely entirely on the national scheme without buying some kind of suplemental insurance or paying for it out of pocket. For those that can currently afford good health care nothing will change. The good helath care will still be available (at a cost as it is now).

    The implication and lie of the ads will be (and I am making a prediction here) that you will be stuck with the national system and nothing else.

    Karen,
    “I have been to many many support groups and in sharing personal, intimate moments with people suffering from this very real disease, it has been my first-hand experience that many people have been given a determined amount of time to live – – UNSOLICITED.”

    Karen I would agree with you, there is clearly something wrong in the way these doctors are approaching this. The variablility in survival tends to be rather large and then for most cancers there is an extremely small number of spontaneous recoveries, where the person’s immune system kicks in and destroys the cancer cells. So to give a patient an absolute call in number of months could be unnecessarly discouraging. I have a friend now with a bad cancer that has spread, he is undergoing chemo on an experimental protocol. What the doctor did tell him was for how long his best patient had been going and was still alive, and how quickly things went bad for the patient that did worse. I would hope this would be the approach of most doctors.

  20. #20 Sid Schwab
    July 31, 2007

    sailor: Once again, we agree. You noted, I assume, that in my blog-posts I said that, for practical reasons, there’d be — moral issues aside — a two-tiered system if the US ever gets around to a national program. And, if you’re interested, today I wrote about the other NYT article from Sunday, about fee-for-service. I’d argue that what I said is reality/human nature based. And, since we agree a national system would include overt or covert rationing, it’s clear that the lady in question in this thread would not be covered, at some age, if at all. 39? 43? 60? Shall we vote? Given the complexities of medicine itself, and the differences among those that provide the care, it seems nearly insoluble, when one really tries seriously to address it.

  21. #21 Eric
    July 31, 2007

    One of the things in the comments really nailed it for me:

    I suppose as a general rule you could say, “Well, if you have a routine, uncomplicated cancer, you could do as well in a community care setting as you could anywhere else.”

    But then how do you know if your cancer is routine…or uncomplicated.

    This is the *exact* position I found myself in as I tried to help my mom (late recurrence (20+ years) of early (39 at diagnosis) metastatic ER+/Her2- breast cancer. She’d had mastectomy and 1983’s standard-of-care chemo (pre-anthracyclines and taxanes) and never had hormonal therapy). She had extensive mets to the pleura and bones, and presented with cardiac tamponade and a collapsed lung caused by the pleural effusion.

    She found herself, thanks to remarkable powers of denial, flat on her back in an ER with a personality-challenged surgeon telling her to go home and not buy green bananas. I assure you, said surgeon did *not* frame her prognostications in “average survival” – mom was flat-out told it was a matter of days, not weeks. Charm school is indicated. (Perhaps more galling, the services of the surgeon were among the first billed, before mom met her deductibles and co-insurance, so she had to write a fat check to that inconsiderate snatch – I hope said doctor finds herself in such a position someday)

    Proving that living well is, in fact, the best revenge, my mom’s survived another *four years*. She travels, works full-time and volunteers in the community. She *chanced* into a community oncologist who wasn’t a nihilist, she had adequate insurance coverage and she had a willingness to fight the battle. What we did not have is good evidence to go on – the oncologist hadn’t treated *anyone* with this combo of diagnosis, treatment and survival. This did not inspire confidence.

    I’m motivated. I was able to reach out and find centers who had seen dozens of women in similar circumstances, and find out that aggressive treatment had a reasonable chance of success. I found talented professionals who felt it was reasonable to try to keep her alive for The New New Things that might be coming online. Mom made a decision to undergo grueling treatment because Smart People said “There’s a reasonable chance this could prolong your life with excellent quality.”

    The only reason we knew that mom’s case was even slightly unusual is because I asked an impertinent question of the original medical oncologist. Not every sick woman has a tenacious, loyal, “sciency” son with questionably-pure motives to look out for her. (I fear that my mom will haunt me dead in a more annoying way than how she haunts me as a member of the living, thus, prolonging her life delays my suffering her unannounced visits from the afterlife – at least as a living entity, I can use Caller ID and give her a ring back later). How the hell would I know that this kind of survival with an “ineffective” chemo regimen and a lack of antiestrogen therapy borders on the apocryphal? Nobody said “You know, things don’t look great right now, and I haven’t treated many women like you. I think you’d be well-served to consider a referral center or an academic setting for an evaluation when you’re medically stable enough to move. Breast cancer, even though you managed to make it something that presented through the ED and required a LifeFlight transfer, is not an emergency, and you should explore several options before signing on the line.”

    I can’t help wondering, in the back of my mind, given the profit motive in many oncologists’ sales of drugs to gravely ill people, reimbursement structures and not being a contracted doctor in our insurer’s network, if, in part, the decisions made in my mother’s care had a crass commercial taint to them and the oncologist “got lucky” when the experts concurred (every single one, in fact) that the treatment proposed was both appropriate and likely to benefit mom.

    So, how much experience in similar cases is “enough” when it comes to evaluating a medical oncologist’s knowledge? Obviously, making sure every woman gets at least the standard of care in something like DCIS is beyond the capabilities of the system, so where do you draw the line that you’re an outlier and need truly expert opinion? My mom was afraid that I was “bothering” the resources I sought advice from, because “it’s terminal breast cancer – it’s not that complicated”.

    Eric, Crankily

  22. #22 sailor
    July 31, 2007

    “I’d argue that what I said is reality/human nature based. And, since we agree a national system would include overt or covert rationing, it’s clear that the lady in question in this thread would not be covered, at some age, if at all. 39? 43? 60? Shall we vote? Given the complexities of medicine itself, and the differences among those that provide the care, it seems nearly insoluble, when one really tries seriously to address it.”

    No I would say on a national health plan it would be chemo and that is it. In this case it might be an unfortunate mistake because Karen clearly knows where she is going with this, and if anyone can benefit, I suspect she will.

    I think one of the mistakes that has been made in trying for universal health care has been to make it too inclusive. People have to accept that universal health care WILL be rationed. Poor people will benefit enourmously, well off people will not loose if they can afford a better plan.

    Overall, unless it is horribly managed, it should not cost any more than at the moment, though some insurance companies and some pharmaceutical compnaies will loose big time (I think a universal system should insist on generics and refuse something like Nexium unless an older drug like Prilosec clearly oes not do the job). It might even save money as, if people got to the doctor on time, it might save more expenisve procedures later (that is what the Doc I visit tells me).

    Anyway I am off for a few days, I might come over to your blog and discuss how a universal plan might work when I come back.

  23. #23 Renee
    July 31, 2007

    I think there is some confusion to patients with respect to the term ‘palliative’. It can refer to treatments that are not meant to cure, but to extend life and lessen symptoms. But often, patients hear the word ‘palliative’ and think it refers to the palliative treatments given in hospice care. If I understand this correctly, there is a speciality called ‘palliative medicine’ that involves hospice care.

    So, for a cancer patient to hear the word ‘palliative treatment’, this may come across as ‘hospice care’.

    Perhaps the woman who is the focus of the NY Times article is not quite the norm for a cancer patient. However, her experiences trying to navigate the healthcare system are all too common, particularly wrt doctors and differing opinions.

    I am curious why, after her surgery at Johns Hopkins, her oncologist and the surgeon were incommunicado with each other. Was the oncologist ticked off because the patient didn’t follow his advice? Was the surgeon ticked off at the oncologist’s prior course of action? Pity the poor patient, caught in the middle of all this.

  24. #24 Sid Schwab
    August 1, 2007

    I should have been clearer, sailor: when I said she wouldn’t be covered, I meant her radical surgery. Once again, we agree.

  25. #25 Alison Cummins
    August 7, 2007

    I haven’t read the NYT article, but I find it interesting that Orac and Ms. Pasqualetto have two different ideas about what the article was about.

    Orac thinks it was about the dangerous variability in cancer care.

    Ms. Pasqualetto thinks it was about the fact that because cancer care is variable, patients must be their own case managers, educating themselves about treatment and taking the initiative to find doctors who will treat them the way they think they should be.

    Like I say, I haven’t read the article, but I find it entirely plausible that you are both right.

    Whether or not you are both right about the topic of the article, I agree with you both about the state of the world. I certainly know the frustration of being a patient who cannot rely on a doctor to advocate for her, who must judge for herself whether treatments are desirable or effective, who must contradict the judgement of health-care providers and seek out others more to her own judgement. That this must be done in a spirit of antagonism rather than cooperation is hugely galling: I am very sick and struggling to stay alive and I have to mediate between two MDs squabbling like kindergarteners about my care? Not even squabbling directly the way kindergarteners do: more like those evil divorced parents who make their kids carry messages between them.

    Really. Getting treatment for serious illness can feel a lot like that. It feels terrible. It feels like an unreasonable burden on the seriously ill person. It might be necessary, but it doesn’t seem fair.

    The universal mantra these days is that patients must educate themselves. That sounds fine and reasonable and hunky-dory, but what it means in practice is that seriously ill patients must make treatment decisions for themselves without the benefit of having received a medical education. It means they are their own case managers and they have to make sense of contradictory inputs on their own – there’s nobody else to do it. That without the benefit of a medical education, they must have enough confidence in their own judgement to fire a doctor who is saying something they don’t want to hear and instead seek out another who is more to their liking. (But… I thought doctors *didn’t* like that?)

    It puts the seriously ill patient in the position of someone shopping for shoes, and it absolves one’s doctor of the responsibility to case-manage. The clerk at the shoe store is not responsible for finding me shoes to my taste, budget and size – I am, and it’s up to me to educate myself about shoes and shop around. So if I browse the store and leave when don’t see anything I like, that’s fine. The clerk’s responsibility has ended.

    Treating deadly illnesses is more serious than buying shoes with too-high heels. The consequences are greater and the knowledge required to make sense of the options is greater. But patients can feel as though they are left to their own devices. They might, in fact, *be* left to their own devices.

    Nobody said live was fair, but we don’t have to like it.

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