August 30, 2010

Colon Cancer: The Best, Safest Way to Get Checked Out -- and to Prevent Malpractice

Recent news reports suggest that getting only part of your colon scoped for precancerous lesions might be a good enough way to prevent colon cancer. But the real story is that whatever test you get, there is a wide variation in the quality of the colon examinations that doctors do, and out of hurry or poor training, some doctors miss a lot of lesions that should be taken out.

So if you want to have a safe, effective -- and potentially life-saving -- exam, you need to do some simple doctor screening to make sure the doctor is right for you.

The good news is it's not that hard. Research has found that two simple questions will bring out what you need to know to assure that all the trouble you're going through to get your colon examined will be worthwhile.

Before I lay out the questions, some quick anatomy to make this easy to understand:

The food we eat passes through the stomach and then through nearly thirty feet of small intestine before hitting the large intestine, or colon. The place where the small intestine joins the colon is called the ileocecal valve. It connects the ileum, the final part of the small intestine, to the cecum, the first part of the colon. The cecum is also where your appendix dangles off the end of the colon. In most people, the cecum and the appendix are in the right lower section of your abdomen. Intestinal contents travel from there vertically, in the ascending colon, up your right side toward the liver. The colon then turns 90 degrees to cross your belly from the right to the left. This section is called the transverse colon. Then the colon turns south in the descending colon, which runs down the left side of your abdomen. Finally it moves sideways one more time, in the sigmoid colon, which then reaches the rectum and the anus.

A colonoscopy uses a flexible telescope inserted through your anus to travel the entire length of the colon, to where it ends at the cecum. Most of the visual inspection by the doctor is done while the scope is being pulled back from the cecum to the exit at the anus.

A sigmoidoscopy, by contrast, only inspects the first foot or so of your colon. In some people, that's enough to find most precancerous growths. But in many, it's not. African-Americans, for example, have a higher rate of colon cancer in the further reaches of the colon beyond where the sigmoidoscope looks.

So the smart choice is to go with the full colonoscopy, even though the bowel preparation you have to undergo is more burdensome. That's the recommendation of the American Gastroenterological Association, the doctors' group that specializes in the intestines.

Now for the two questions to get the best chance of a good colon exam:

First, ask the doctor:

What is your detection rate of precancerous polyps?

(These are technically called adenomas). The rate should be at least 20 percent -- or 25 percent in men patients and 15 percent in women patients. A lower rate means the doctor is very likely missing precancerous lesions that are waiting to turn into cancer -- when the whole purpose of the colonoscopy is to find them and snip them off before they go bad.

The second question for the doctor:

What is the amount of time you typically take to inspect the entire length of the colon?

This answer should be at least six minutes. It takes that long to adequately inspect all the nooks and crannies.

Both these questions get at the same issue. You want to minimize the chance that a hurried examination will give you a clean bill of health by mistake.

How often does that happen? Frightfully often. In research published this year, the rate of colon cancers in people who had had a colonoscopy within the previous five years was ten times higher when the doctors who did the colonoscopy had a detection rate of ten percent or less, compared to doctors who had a detection rate of twenty percent or more.

Dr. Douglas Rex of Indiana University has written guidelines for his fellow gastrointestinal doctors about how to do an adequate colon exam. Dr. Rex is an advocate for careful comparison shopping by patients. In an article he wrote for fellow practitioners, he estimated that the doctors with the lowest detection rates are missing 75 to 90 percent of precancerous growths in the colon.

That's a huge number. But patients can do their part to make sure their colon cancers aren't missed by asking these simple questions before they undergo a colonoscopy.

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July 20, 2010

Malpractice in Over-Diagnosis of Breast Cancer

A long article in the New York Times brings home the dangers of women undergoing disfiguring surgery or radiation for breast cancer they never had. The story is a familiar one to malpractice attorneys but not well enough known to the public: The critical job of determining if breast tissue is cancerous or not is sometimes left in the hands of inexperienced pathologists who are prone to error.

The problem is worse with diagnosis of "ductal carcinoma in situ" (DCIS), an early form of cancer that may or may not progress to truly invasive cancer. The criteria for DCIS are sometimes subtle and not all pathologists agree on them.

What can patients do to protect themselves?

As I write in my book, "The Life You Save," you should never have any kind of cancer surgery without at least one second opinion on the biopsy. You can have a top cancer pathologist review your tissue slides for a cost of at most a few hundred dollars, and it might even be covered by your insurance.

Second, make sure the pathologist who interprets your specimen has enough experience. The College of American Pathologists now says 250 cases a year are the minimum for competence in this field, and it is starting a special certification program for breast cancer pathology.

The Times' article features Monica Long, a nurse in northern Michigan who had disfiguring breast surgery for DCIS, only to learn later that she never had it. She also learned too late that the pathologist at her hospital had only seen 50 cases a year and was not yet certified in any kind of pathology when he gave the reading on her tissue.

Some women get so scared by the diagnosis of DCIS that they have BOTH breasts removed. As previously reported in this blog, having a healthy breast removed does not improve a woman's statistical odds of survival. And as many as two out of three cases of DCIS never progress to full-fledged cancer. But such is the power of the "C" word to frighten people into doing anything -- even undergoing mutilation unnecessarily -- to try to stay alive.

This makes it all the more imperative for the pathology community to develop better criteria for the diagnosis of DCIS, and to improve the certification program so that this scary diagnosis is not made unless it's truly warranted.

The Times' "Well" blog has compelling accounts written in by other patients. Click here to browse them.

Reading these stories compels me to make another point: Unless you are financially destitute, I think it's a bad idea to let insurance coverage drive important medical decisions. If the insurance company won't pay for getting a second reading on the biopsy, scrape up the dough and get it done yourself. You'll be glad you did.

Among other second opinion providers, the Armed Forces Institute of Pathology in Washington, DC, gives second readings at a modest cost.

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March 13, 2010

Removal of Healthy Breast in Cancer Patients: Overtreatment or Peace of Mind?

More and more women with cancer in one breast are now opting to have the other healthy breast removed as well, even though the statistics show survival odds don't improve by having both breasts removed and most patients end up with chests that are numb to sensation.

Peace of mind is cited by many of these cancer patients for their decision.

A new report by Tara Parker-Pope in the New York Times details this trend, and the Times' "Well" blog has a number of interesting comments from women and cancer experts.

As many as three in ten breast cancer surgeries in large urban cancer centers are for preventive removal of the healthy breast, the Times reported.

But what is prevented, exactly?

The only women who get a very slight survival bump from having their healthy breast removed are patients under age 50 who have estrogen-negative cancers that don't respond to drugs like Tamoxifen. For everyone else, there is no real advantage in having the second breast removed. When the second breast gets cancer, as happens sometimes, that is not "spread" from the original cancer but is a new, unrelated cancer.

The real risk that women face from the original cancer is that it has already spread beyond the breast, but removal of the second breast doesn't help that risk.

The most striking evidence of how afraid of cancer women are is with DCIS: ductal carcinoma in situ, which is not even considered true cancer by many experts because it either disappears or never progresses in two-thirds of women. Yet still many women with DCIS are electing to have not just the one breast removed, but both.

Ultimately, this is an intensely personal decision. But it helps to get the true facts first.

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March 11, 2010

PSA Test's Inventor Says It's Time to Say No to Routine PSA Screening

The man who discovered the PSA test for prostate cancer now says the test is so overused it has become a public health disaster with an annual price tag of $3 billion in wasted testing.

Dr. Richard Ablin writes an op-ed piece in the New York Times calling for the test to be abandoned for routine cancer screening for men over age 50. At most the test is useful in men with a family history of prostate cancer and also useful to detect cancer coming back in men who have already has their prostates removed for cancer.

Dr. Ablin notes that the appropriate use of the test is a tiny portion of the amount of testing now occurring, driven by those who profit from use of the test. He concludes:

I never dreamed that my discovery four decades ago would lead to such a profit-driven public health disaster. The medical community must confront reality and stop the inappropriate use of P.S.A. screening. Doing so would save billions of dollars and rescue millions of men from unnecessary, debilitating treatments.

As this blog noted in an entry a year ago, large studies have been published showing that the PSA test saves very few, if any lives, when used for routine screening, and it causes many men to undergo unnecessary, painful and potentially harmful biopsies and surgery.

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January 5, 2010

Breast Cancer Screening: The Quiet Truth

The political brouhaha that followed the new guidelines on mammograms has now died down, maybe enough so that patients can start to absorb the quiet truth about breast cancer and the role of mammogram screening.

The National Breast Cancer Coalition has worked since 1991 to get Congress to fund research and appropriate treatment for this disease. The Coalition believes in sticking to the facts and analyzing closely the research studies that have been published about what mammograms can and cannot do for women who aren't aware of a lump in their breasts.

Here is an excerpt from their discussion of the US Preventive Services Task Force recommendations:

Has breast cancer screening had a significant impact on mortality from breast cancer?


No, over 40,000 women continue to die of breast cancer each year, despite the emphasis on breast cancer screening in our country. To change this, we must address the facts about breast cancer and not simply accept what we want to believe. The fact is that all breast cancers are not equal and that we don’t currently have tools for “early detection” that are good enough for the life-threatening breast cancers.


But doesn’t early detection save lives?


Not necessarily. Some breast cancers are slow-growing and have a good prognosis, whenever they are found, whether small or large. Other breast cancers are aggressive and fast growing, and we don’t have the tools to catch them early enough or treatments that will work.


Why doesn’t mammography work as well for women in their 40s?


Younger women have more dense breast tissue, making mammography less accurate. Also, mammography is better at detecting slower growing tumors more common in older women, than the fast-growing, aggressive tumors more often found in younger women. And the balance of benefit vs. harm changes as women get older since the likelihood of breast cancer increases with age. The disease is relatively rare in younger women.


But shouldn’t a woman in her 40s have a mammogram if she feels a lump?


Certainly. The Task Force recommendations are meant to be guidelines for broad public health policy for healthy women with no symptoms, and an average risk for breast cancer. These guidelines are not meant for any woman with an increased risk or for any woman who feels a lump or change in her breast. Women who have any concerns need to visit their doctors and may need diagnostic mammograms. Mammograms taken to assess a problem are not the kind of mammograms we are talking about with these guidelines.


What’s the harm in trying to detect breast cancer early, even if our methods don’t work that well?


The harms from screening too early or too often include increased false positives, leading to increased imaging and radiation exposure, biopsies and scarring that can affect the accuracy of future mammograms, and anxiety. There is also the harm of overdiagnosis of breast cancer. This would involve treatment of cancers that would never be life threatening, and treatment of cancers that may regress, or go away on their own. The treatments for breast cancer are not aspirin, they are toxic and can be life threatening; the scenario of overdiagnosis should not be taken lightly.

The cancer coalition supports the Task Force's recommendation that women who are not in a high risk category (from a family history or presence of the BRCA gene) start thinking about mammograms around age 50, not age 40.

Here is another useful summary from the National Breast Cancer Coalition: 31 Myths and Truths about breast cancer. You can read it here.

We have discussed the statistics behind breast cancer screening in several entries on this blog. Read them here and here and here. My belief is that women need to understand the numbers and then make a personal choice. Politicians don't need to enshrine mammograms as some sort of constitutional right, as happened in the US Senate not long ago. We need more compelling evidence before this screening device goes onto the "do not touch" pedestal.

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December 29, 2009

More on Those Glossy Ads for Cancer Treatment

Several thought-provoking letters appear in the New York Times responding to the recent piece about the cancer treatment industry's advertisements. One letter was from Dr. James Rickert, of Bloomington, Ind., president of the Society for Patient Centered Orthopedics:

To the Editor:

As a cancer survivor who has faced recurrent bouts of disease, I agree that the intense marketing campaigns used by cancer centers only heighten the stress and anxiety of the difficult treatment decisions that all cancer patients face. It becomes nearly impossible, at a time when one feels that any poor decision could be fatal, to wade through all the non-science-based claims for success.

As a physician who treats many patients with terminal metastatic disease, I have seen that this marketing often leads to heart-wrenching guilt and second-guessing by patient and family alike when treatments fail. Rather than being allowed to accept that their disease was incurable despite the best medical care, patients often feel that they are somehow to blame for choosing the wrong institution in which to receive treatment.

This is a distressing example by our nation’s finest medical centers of the shameful practice of placing financial concerns before the needs of the patients that they claim to serve.

If our academic medical centers cannot offer better patient-centered, evidence-based care than this, where in the world shall the medical community look for leadership?

Dr. Rickert makes an even better case than I could about the dangers of relying on advertising to make important decisions.

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December 19, 2009

Cancer Treatment Industry Markets Hope to Desperate Patients:

The ads are striking: Handsome, smiling people, very much alive, victors over cancer -- thanks to their choice of a prestigious cancer center for their treatment. But are they true?

The cancer centers -- with brand names like Sloan-Kettering and Massachusetts General -- cannot prove that the patients are alive because of something unique about their institutions. But they don't have to prove anything, under the law. If a drug manufacturer wanted to make a similar claim, it would have to line up statistical evidence, and the ads would have to have a lot of disclaimers. The ads from the cancer centers have no such disclaimers, and little to no backup from statistics.

Natasha Singer has a thoughtful article in the New York Times exploring these ads and what patients who are looking for cancer treatment should do.

The marketing executives who craft these ads say they're not even aimed at current patients -- but are more "reputation advertising," as one told the Times.

The article has a good sidebar that gives tips for how patients should shop for cancer treatment.

A regular community hospital can be fine for common cancers like colon, but for anything unusual, it's best to look for a center that sees a lot of that condition.

The National Cancer Institute designates Comprehensive Cancer Centers for their scientific excellence and comprehensive approach. Here is a list from the NCI. Ironically, these are some of the same centers with the heavy advertising budgets.

In my book, "The Life You Save: Nine Steps for Finding the Best Medical Care -- and Avoiding the Worst," I discuss the importance of a multi-disciplinary approach where doctors from different specialties collaborate together on figuring the best line of attack to a particular patient's cancer. Most advanced centers have "tumor boards," where these collaborative discussions occur, usually at no extra charge to the patient.

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December 15, 2009

When Prevention Just Isn't Worth It for the Patient

A drug that can cut a woman's risk of breast cancer in half when taken regularly is proving to be a tough sell when women have a chance to fully understand the pros and cons of the medication.

The drug is tamoxifen. For women at high risk of breast cancer (who have a gene associated with it or a close relative with breast cancer), tamoxifen can reduce the odds of developing breast cancer by 50 percent. Yet recent studies show that when the statistics are laid out for women to make an informed choice, only one in 100 actually fill the prescription.

Are the women who decline to take tamoxifen being illogical? Or just making their own personal choices about what is important to them?

Tamoxifen interferes with the body's use of estrogen. That can lower the risk of estrogen-dependent breast cancers but can increase the risk of other estrogen-related side effects like cancer of the endometrium (the lining of the uterus), blood clots and sexual dysfunction.

Here is how the numbers were spelled out to women in a recent study at the University of Michigan, as reported by Tara Parker Pope in the New York Times:

The risks of breast cancer vary with age, family history, and age of first childbirth. So a 52-year-old woman who had her first baby after age 30 and whose mother had breast cancer, has about a 1.9% risk of developing breast cancer over the next five years. If 1,000 women just like this 52-year-old took tamoxifen over those five years, the research says that here is what would happen:


* Of the nineteen women (same as 1.9%) who otherwise would have developed breast cancer, nine will not develop breast cancer. (Thus the statistic about lowering the odds by half.)

* Thirteen women would avoid broken bones from osteoporosis, another benefit of tamoxifen.

* Twenty-one women would develop endometrial cancer (typically more treatable and less deadly than breast cancer if caught early).

* Twenty-one women would develop blood clots.

* Thirty-one women would develop cataracts.

* Twelve women would experience sexual problems.

* One hundred twenty extra women would get hot flashes and other menopausal symptoms (in addition to those who would get such symptoms anyway).

Behavioral economists might say this is an example of "omission bias," where we are more worried about a small risk from doing something new (taking a pill) than we worry about a larger risk from doing nothing. Put another way, we often see the status quo of doing nothing as safer when it really isn't.

At least that's how the researchers quoted in the NYT article explained the unpopularity of tamoxifen. But for readers who posted comments on the newspaper's blog, they tended to see the women voting against tamoxifen as being quite sensible. It just doesn't sound worth the downside.

Part of the problem is the apples-to-oranges comparisons involved when a fatal condition is compared to a non-fatal one. As one commenter posted:

What might make women make better choices is if they had data on whether the pill reduced the risk of DEATH from all causes. If only some of the breast cancers avoided would have resulted in death but all of the endometrial cancers aquired resulted in death, women might make the choice to avoid tamoxifen. If the risks were reversed, they might choose to take tamoxifen. We have to move beyond a discussion of risk of cancer and towards a discussion of risk of cancer DEATH. http://www.medpie.com — Barbara Lock, MD

If we had the same careful discussion about mammograms, women likely would opt for far fewer of these tests, which save lives on a similar scale as tamoxifen, with plenty of downside.

My conclusions from this debate:

* Patients need to know there are no magic bullet drugs that are all gain, no pain. Tamoxifen interferes with estrogen, which is good for some diseases, not so good for others. This is typical. Each drug must be carefully weighed for its pros and cons.

* We're all better off with a full exploration of the odds and then make our own decisions. There is no right or wrong.

* The best way to understand risk is the way it's spelled out here: with numbers of actual people in a given standard-sized group. It's too confusing when we talk about percent this and percent that.

I tell readers how to do this technique of "counting the people" in my book: The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst.


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November 18, 2009

Mammograms: Understanding the Risks and Benefits

The new breast cancer screening guidelines demonstrate yet again why savvy patients need to understand the numbers behind risk/benefit studies before making the very personal decision about whether and how often to get a cancer screening test.

The recommendations of the U.S. Preventive Services Task Force that women hold off on routine mammograms until age 50, and then get one every couple of years instead of every year, are based on sophisticated statistical modeling that aimed to get the most benefit at the least harm. The benefit is saving lives. The harm is overdiagnosing, overtreating, and needlessly frightening women who receive "false alarms" with mammograms.

The key fact that women -- and all patients -- need to understand is that your risk of a "false alarm" depends on your risk for the disease. The lower your natural risk of disease, the higher the risk of a false alarm, and vice versa. The reason the task force said that women between ages 40 and 49 don't need screening is that with the low risk of disease in that age group, the chance of needless false alarm is much higher, and the benefit of discovering the occasional cancer is much lower.

For example, one statistical model, called the Stanford model, which the task force looked at, concluded that if women between ages 40 and 69 got mammograms every year, there would be on average 2,250 false alarms -- "false positive" results -- in every 1,000 women -- an average of two per woman tested over ten years. On the other hand, there would be a total of 164 years of life gained among these 1,000 women. When the mammograms were reduced to every other year, and only given between ages 50 and 69, the years of life gained were 99 and the false alarm rate went down to 780 per 1,000. That is the tradeoff.

Those extra 65 years (164 versus 99) of life gained among the 1,000 women also come at an economic cost: if 1,000 women have to get 10 mammograms each over 10 years, that cost is around $10 million (assuming $1,000 per mammogram).

We don't like to think about "rationing" medical care, but sensible decisions on both a personal and societal level have to take into account how much we're spending for how much gain, and what else the same amount of money could be spent on.

In my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst," I have an extensive chapter on the risks and benefits of breast cancer screening at different ages. Here is an excerpt:

What about saving lives with screening tests intended to catch early cancers? Here is how that statistic of a 25 percent reduction in deaths translates in the real world. If you thought that means that of every 100 women screened, 25 of them would be saved by mammograms, you would be making a natural assumption that many others have made, but you would be very far off the mark. The actual numbers come from a series of studies in Sweden involving some 280,000 women. Of those over age forty who did not undergo mammograms, 4 in 1,000 died of breast cancer over the ten years of the study. Of those over age forty who did have mammograms, 3 in 1,000 died of breast cancer over the same ten years. The reduction from 4 to 3 per 1,000 is where the 25 percent number comes from. Put another way, for every 1,000 women who participate in mammogram screening for ten years, 1 of them will be saved from dying of breast cancer.7 The odds of saving 1 life are a little improved if screening begins only at age fifty instead of forty. Of every 270 women who start screening mammograms at age fifty and undergo one every other year for the next twenty years, 1 life will be saved—or about 4 in 1,000, which is a lot more than the 1 in 1,000 lives saved for starting mammograms at age forty.

The new statistics from the Preventive Services Task Force concluded that the benefit from mammograms in women aged 40-49 was even lower than the Swedish estimates -- more on the order of one life saved for every 1,900 women screened, instead of one in 1,000.

Here's the bottom line, as I put it in my book:

Are those kinds of odds worth it to undergo the trouble of regular screening? That is a personal decision. My only point is that to make that decision rationally and realistically, you need to look at the numbers with eyes wide open.

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November 13, 2009

Just Diagnosed with Cancer? Read on ...

Patients with newly diagnosed cancer often feel that they have been uprooted from home and tossed into a foreign land -- with strange landmarks, foreign language and more than enough fear and anxiety for a lifetime. It's very useful to have guidance from a cancer survivor who has been there. A new article by a cancer survivor and professional advisor does just that.

The article by Kathryn Gurland, "A Survivor's Compass," has eleven helpful tips for negotiating this new foreign territory. She starts with the helpful reminder that a cancer diagnosis is not a medical emergency, and you don't need to rush into treatment before you thoroughly educate yourself on all your options.

Other advice includes:

* Make sure you are memorable to the care providers, and not just "another cancer patient." Small things like wearing distinctive clothing, showing your sense of humor, talking about current events -- all can help make you stand out from the crowd, and thus form a better bond with the providers.

* Never be shy about asking for the help you need, and also making clear what you DON'T need.

Read more here.

Ms. Gurland's advice echoes that in Patrick Malone's book, "The Life You Save," which helps patients understand the vital need to get second and third opinions before they undertake cancer treatment. The heart of good care, as Mr. Malone teaches, is clear communication and complete understanding by the patient and the family of everything that is going on.

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August 12, 2009

Preventive Health Care: U.S. Is Dead Last Among Industrialized Nations

"Amenable mortality" is a body count of unnecessary deaths due to lack of preventive health care. The latest measure is not flattering to the American health care system.

Researchers count these deaths by looking at premature deaths in areas like these:

* Adults who die from breast or colon cancer before age 75, indicating lack of timely mammograms or colon screens or care. * Children who die before age 14 from vaccine-preventable or easily treatable illnesses such as coughs, measles, asthma, and other respiratory problems. * Diabetics who die before age 50 from complications that could easily have been prevented with proper medical management. * People who die from infections or hypertension before age 75, a symptom of lack of preventative and appropriate care, including blood pressure control.

In the mid-1990s, the U.S. ranked 15th out of 19 industrialized nations in its death rate from "amenable mortality." Now the figures have been updated, and America is in last place -- 19th out of the same 19.

France, Japan and Australia do the best in this ranking. The United Kingdom used to be worse than the U.S. but has gotten a lot better.

Consumer Reports has a chart of the latest data here.


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July 17, 2009

Cancer Screening: Not All It's Cracked Up to Be

Everyone has seen the ads: for cancer of the breast, prostate, colon and now thyroid cancer -- urging Americans to get a test to see if they have cancer and can get early life-saving treatment.

The new thyroid campaign says: "Don't forget to check your neck." However, it's a rare disease that kills about 1,600 Americans a year, but that many millions now may worry about because of this well-meaning campaign.

The trouble with cancer screening, as previously discussed in this blog about mammograms and prostate cancer PSA screening, is that in completely healthy people who have no symptoms and no special risk factors, screening can turn up far more false alarms and bring about dangerous and unneeded treatment, than the good that is done when a few cancers are caught.

A new article by Natasha Singer in the New York Times makes this point about the new thyroid media campaign, plus a proposal by Florida Congresswoman Debbie Wasserman Schultz to spend $45 million in federal money on a campaign to teach women under age 40 about how to examine their breasts. Critics of that proposal, including cancer surgeon Susan Love, say there is no benefit in early testing of women in their 20s and 30s for breast cancer. Dr. Love wrote the congresswoman: "Once you have made women more 'aware' of their potential risk, you will have nothing to tell them to do!"

The U.S. Preventive Services Task Force, a group of independent experts, recommends routine screening for only a few kinds of cancers, and breast mammograms for women under age 50 are the weakest of their recommendations. According to the article:

for otherwise healthy people with no symptoms,[Dr. Ned Calonge, chairman of the Task Force] said, only a few routine tests have proven to significantly reduce cancer deaths among certain age groups. The task force recommends pap smears for cervical cancer beginning no later than age 21; regular mammograms to screen for breast cancer in women starting at age 40; and tests for colon cancer starting at age 50. And the task force notes that the evidence supporting the breast cancer screening is not as strong as for cervical and colon cancers.

Most other types of screening, meanwhile, have not been proved to reduce the death toll from cancer, said Dr. Kramer at the National Institutes of Health.

“You need a high bar of evidence to start advertising screening to healthy people, most of whom will not benefit,” Dr. Kramer said.

One important caveat: Nobody should ignore symptoms. Once something bothers you or changes or seems unusual, you are no longer in the category of routine screening. Your risk is much higher and you should be checked promptly.

I discuss the reality behind cancer screening numbers in Chapter 8 of my new book on health care, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst." The title of Chapter 8 is: “Should I Be Tested?” Why Understanding the Numbers Is Crucial.

A good book entirely focused on this topic is by Dr. H. Gilbert Welch of Dartmouth, called "Should I Be Tested for Cancer?: Maybe Not and Here's Why."

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June 2, 2009

Some Antidepressants Suspected to Increase Breast Cancer Recurrence Rate

At the annual conference of the American Society of Clinical Oncology, scientists presented a new study that found certain antidepressants may interfere with the effectiveness of tamoxifen, a drug commonly taken by breast cancer survivors to keep the cancer from coming back, according to an Atlanta Journal-Constitution article.

Tamoxifen has been used for decades to treat breast cancer and, for the survivors, to prevent tumors from forming again. One of the most common side effects of tamoxifen is hot flashes, which can be controlled by SSRI (selective serotonin reuptake inhibitor) antidepressants such as Paxil and Prozac. The new study shows that this cocktail of drugs seems to account for a higher recurrence rate of breast cancer. The study followed almost 1,500 women whose average age was in the early 50s. Researchers found that women who took both tamoxifen and the SSRI antidepressants were almost twice as likely to have their breast cancer return within two years.

At the same ASCO conference, another paper was presented that found no correlation between breast cancer recurrence rate and use of antidepressants. However, authors of this second study pointed out that this study included a much smaller pool of subjects, and they join authors of the first study in recommending that other options should be considered to treat hot flashes.

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June 2, 2009

Test for Early Detection of Ovarian Cancer Relapse Doesn't Help Prolong Life

The received wisdom of cancer treatment in the United States is that early detection and early treatment save lives. But this is not always true with some types of cancer. Sometimes the early detection of a cancer just means the patient lives longer with the knowledge of having cancer, but their life span is the same as it would have been with later detection.

A new study of women with ovarian cancer has found that women who undergo blood tests every few months to check for early signs of recurrence of the disease do not live any longer than women who wait until they feel symptoms from the cancer's return. The test is called CA125.

As reported by Andrew Pollack in the New York Times, the new study was presented at the annual meeting of the American Society of Clinical Oncology.

The reason that the CA125 test doesn't help is that some cancers are resistant to chemotherapy, so whenever treatment is started, it doesn't matter, and others are very sensitive to chemotherapy, so that they can be knocked back whether treatment is started early or a few months later. This is according to the lead author of the study, Dr. Gordon Rustin of the Mount Vernon Hospital in Middlesex, England.

Peace of mind is an important related issue. A lot of patients experience anxiety when they are waiting for the results of the periodic tests. For some, the knowledge makes them feel in control; for others, the anxiety is too much and they would prefer not to know. So getting the test becomes a very individual decision.

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April 28, 2009

New Study Shows Benefits of Keeping Ovaries

Since the 1970’s, gynecologists would generally advise women who are hysterectomy candidates to also have their ovaries removed, along with the uterus. The idea was to prevent ovarian cancer, which is difficult to detect but often deadly. However, Roni Rabin reports in a New York Times story that a new study finds compelling reasons for women to keep their ovaries.

The study, published in the May issue of the journal Obstetrics & Gynecology, tracked almost 30,000 women over the span of 24 years. It found that women who had their ovaries removed were at a greater risk for heart disease and lung cancer, and were more likely to die of cancer than those who left their ovaries untouched. For women who had their uterus and ovaries removed before they turned 50 and did not take estrogen, these risks were even higher. Scientists believe the continued production of estrogen may be the reason why women who kept their ovaries tended to live longer.

The lead author of the study, Dr. William H. Parker of the John Wayne Cancer Institute in Santa Monica, CA, explained why women should consider keeping their ovaries because although ovarian cancer is difficult to detect and treat, it is much rarer than heart diseases. Every year, heart diseases kill more than 20 times the number of women than ovarian cancer.

Of course, there are women who will benefit from removing their ovaries, especially those who are at high risks of getting ovarian or breast cancer. A patient with strong family history of either cancer should definitely consult with their doctor to decide the best course to take.

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April 6, 2009

Mammogram Benefits Exaggerated?

Widely hailed for saving lives through early detection of breast cancer, mammography may in fact “do more harm than good,” writes Roni Rabin of the New York Times. Rabin reports that British health care advocates and experts complained in a letter to The Times of London that candidates for mammography receive informational fliers that exaggerate the exam’s benefits and neglect to advise patients of potential harms.

Mammography detects cancers indiscriminatingly, picking up aggressive tumors as well as those so slow-growing that they present no health risks for women who have them. As a result, for every woman saved from deadly breast cancer by routine mammography, at least one other woman would have her life unnecessarily disrupted by overtreatment of a slow-growing cancer that’s not life-threatening.

Mammograms also often result in "false positive" reports which scare women who think the test has shown they have a deadly cancer when further testing shows they have no disease. This is particularly a problem when mammograms are used in low-risk groups like women under age 50.

Further, early detection of the deadly form of breast cancer may not necessarily be life-saving, says Dr. Ned Calonge, chairman of the United States Preventive Services Task Force, which writes consensus reports on all sorts of screening tests, because the cancers are too aggressive to treat even when found early.

In addition to unnecessary emotional distress and extraneous treatment and related costs, other potential harms of mammography include exposure to radiation during the exam.

On the other hand, many doctors, including the director of cancer screening for the American Cancer Society, still believe mammography should be recommended to women of normal risks for breast cancer (e.g. over 50 years of age, family history of the cancer), preferring overdiagnosis to delayed diagnosis.

Before a more definite conclusion is reached within the scientific community, patients should educate themselves about the benefits and harms of mammography, because the ultimate decision of whether to be screened is in their own hands.

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March 19, 2009

More Harm than Help from Screening Test for Prostate Cancer

The PSA screening test for prostate cancer causes far more men to undergo unnecessary and harmful treatment than it saves lives, according to two large new studies. As reported by Gina Kolata in the New York Times, one study that followed 77,000 American men for a decade found zero benefit in lowered death rates, while the other study, which followed 182,000 Europeans for nine years, found that only seven lives were saved for every 10,000 men screened with the blood test.

And for every one of those saved lives, forty-eight men were told they had cancer and underwent unnecessary treatment. That treatment can cause impotence or incontinence if it involves surgery, or problems with bowel elimination if it involves radiation.

The problem is not so much the test but the disease. Prostate cancer is usually very slow to grow, and in the cases where it is aggressive, it may already be too late to save the patient when it is discovered.

Both studies were published in the New England Journal of Medicine.

The same issue, on a less dramatic scale, applies to mammography screening for breast cancer. According to Dr. Michael Barry, who wrote an editorial in the NEJM accompanying the research studies, about ten women receive a diagnosis of breast cancer and undergo needless treatment for every one woman whose life is saved after having a mammogram. Breast cancer is much more dangerous than prostate cancer, so screening can still be warranted.

What doctors need, and still do not have, is a way to sort out cancers that would be deadly without treatment from those that would not.

The bottom line for patients is to ask careful questions of your doctor and understand the numbers before you decide whether cancer screening is right for you. Patrick Malone's new book, The Life You Save, has a chapter that helps patients sort through the statistics of cancer screening.

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March 4, 2009

Even A Glass of Alcohol A Day Can Increase Women’s Risk for Cancers

A study published in February 2009 in the Journal of the National Cancer Institute reports that low levels of alcohol consumption may be responsible for about 5% of cancers in American women (or 30,000 cases a year), Thomas Maugh writes in a Los Angeles Times story. This newfound risk of low or moderate consumption of alcohol may offset its cardiovascular benefits.

For more than seven years, the British-led research followed more than 1 million women between ages of 45 and 75. That is one in every four U.K. women in their age group. The study found that “[h]aving a daily drink was associated with 11 additional breast cancers per year per 1,000 women, one additional cancer of the oral cavity and pharynx, one additional cancer of the rectum, and 0.7 additional cases each for esophageal, laryngeal and liver cancers.” Two drinks a day doubles the cancer rates, and a third drink triples the figure.

Leader of this research, Naomi E. Allen of the University of Oxford, thinks it’s too soon to draw a conclusion on whether women should abandon their daily drinks. Allen is working on a separate study of potential cardiovascular benefits using the same group of study subjects, which she and other scientists hope will bring the overall benefits and risks of alcohol consumption to light.

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February 4, 2009

Annual Inspection May Reduce Deaths from Oral Cancer

One of the less common forms of cancer, oral cancer was diagnosed in about 35,300 Americans last year and caused the death of 7,600 people. Although oral cancer is one of the easiest to detect and diagnose, the five-year survival rate is only 59%, and more than 60% of cases are diagnosed in the late, incurable stages – which may be a result of people not regularly visiting their dentists or not asking to have visual exams, reports Laurie Tarkan of the New York Times.

The most effective way to screen for oral cancer is to carefully look for it. The dentist or dental hygienist should examine the cheeks, the gums, the floor of the mouth, the area behind the teeth, the palate and the tonsil area (pulling the tongue forward), and should feel the lymph nodes of the neck. Such visual exams are found to reduce mortality by 34% in a study done in India. Emerging on the market are alternative tests and devices that may be more sensitive than the traditional visual exams. However, no decisive study has been done to prove that the more expensive tests are necessarily better.

Dentists encourage patients to get a thorough visual exam every year, and they recommend it not only to the high-risk groups (smokers and heavy drinkers) but to every adult, because oral cancer has recently been linked to oral HPV, which is transmitted through oral sex.

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January 11, 2009

Patients Benefit from Getting Second Opinions

When a doctor knows that his patient would receive better care elsewhere, should he inform the patient and send him to another provider? While this question is yet to be settled among bioethicists and physicians themselves, authors of an article published recently in the journal, Public Library of Science Medicine, think doctors have an ethical obligation to tell patients that better care is available to them, according to the New York Times’ Denise Grady.

Research has shown that facilities that perform high volumes of a certain procedure do it better than those that perform the procedure less frequently. The difference is substantial, especially in surgeries of pancreatic and esophageal cancer, although “the experience of the surgeon and the whole medical team [is] important in any major cancer surgery.”

Only a few courts around the country have decided whether doctors have a legal duty to inform patients that another doctor might have more skill and experience performing a planned surgery. One of them is Maryland's highest court, the Court of Appeals, thanks to a client of Patrick Malone named Billy Boone who suffered brain damage after an ear surgeon punched a hole into Mr. Boone's brain.

Mr. Boone's case shows that surgeons' skills make a difference in much more than cancer surgeries. The Maryland Court of Appeals decided that Boone had a legal right to know that his surgeon did not have extensive experience doing the ear surgery that Mr. Boone underwent.

Mr. Boone had an outpatient surgery in January 2000, to remove a benign growth from the mastoid cavity behind his left ear. Dr. Seth Goldberg, an ear nose throat surgeon, performed this surgery, called a mastoidectomy. Seventeen years before, Mr. Boone underwent the same procedure, in which another surgeon drilled out the same mastoid to remove a cheesy growth of skin debris called a cholesteatoma. Unknown to Boone, the surgeon had become lost at one point during the procedure and drilled a hole in the skull just above the mastoid, near the bottom of the brain's temporal lobe. But nothing happened to his brain, which was protected by the tough fibrous shell below the skull called the dura. Years later, when Dr. Goldberg prepared for the new surgery, he took some CT scan pictures of the bone anatomy and saw the pencil-sized hole in the side of the skull.

Dr. Goldberg's surgery seemed uneventful, but after Boone went home, he developed a short-term memory problem that ruined his ability to do carpentry; worse, he developed a problem controlling his temper that unleashed itself at stressful moments on whoever happened to be nearby. Later, his neurologist explained to the jury that Boone's outbursts could be traced to injury in the limbic system that modulates emotional response.

A CT scan showed that a hole had been poked from the pre-existing skull defect into Boone's brain. A small pocket of air could be seen in the temporal lobe, surrounded by a pool of blood. But it wasn't just air in the brain – it was something slightly denser than air, likely surgical gelfoam which could have made its way there only if Dr. Goldberg had pushed it in to try to stop bleeding after he punched the first hole.

The key moment for Mr. Boone came not in the surgery but a month before, when he sat down with Dr. Goldberg to go over the planned operation. Goldberg never volunteered the key information: that with the hole in the skull from the prior surgery, his surgery would be that much more difficult, could even result in an injury to the brain, and Mr. Boone might benefit from consulting with someone who regularly did "revision mastoidectomies," the technical term for this second go-round. A general ENT doctor who advertised his specialty in facial cosmetic work like nose jobs – he named his professional corporation the "Aesthetic Facial Surgery Center of Rockville" – Goldberg only had done occasional revision mastoid surgeries. His operation on Boone proved he wasn't up to the job. On the witness stand, Goldberg admitted he hadn't discussed with Boone the hole in the skull, the chance of brain damage, or the availability of sub-specialists called neurotologists. For Billy Boone, the jury's vote in his favor, and the Court of Appeals' affirmance of the award, gave him some vindication. For other patients, his win makes it easier to demand the information you need to make a sensible selection among surgeons. Of course, if you asked Billy Boone, he would trade in legal vindication for a healthy brain any day. It's too late for him, but not for the rest of us.

(Click here for more information on the Boone case, and follow this link to Mr. Patrick Malone's closing argument.)

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December 19, 2008

Error Rates Mean Patients Should Carefully Select Colonoscopists

Colonoscopy is widely known as a powerful screening/early detection test for colorectal cancer, capable of preventing, or so it was thought, up to 90% of cancers. However, recent studies show that colonoscopy misses many cancers, according to the New York Times in an article by Gina Kolata.

A newly published Canadian study documents the low success rate of colonoscopy in picking up cancer in the right side of the colon, an area where 40 percent of cancers occur. In the left side of the colon, the area directly above the rectum, where cancers should be easier to detect, colonoscopy missed a third of occurrences.

Does that mean patients should dismiss colonoscopy as an ineffective test? Quite the contrary. Although colonoscopy is now found to prevent only 60% of colon cancer deaths, it’s still “a good test,” said Dr. Ransohoff, gastroenterologist at the University of North Carolina. In the Times article, Kolata points out that colonoscopy works relatively well, in contrast with other screening tests: Mammograms prevent 25 percent of breast cancer deaths and the Prostate-Specific Antigen (PSA) test has not been proven to prevent prostate cancer deaths.

In addition, patients can help maximize colonoscopy’s effectiveness by doing their homework. Dr. Douglas Rex, Indiana University’s director of endoscopy and professor of medicine, said that polyps in the colons may be obscured if patients did not thoroughly cleanse the bowels. Taking half of the laxative the night before the test and the other half in the morning – a procedure not always done – can help clear out patients’ systems and improve the visibility of the inner wall of the colon.

Researchers also urge patients to seek out the best colonoscopists who are skilled in performing the test consistently. Patients should ask how many colonoscopies the doctor does each year (a good volume would be three to four colonoscopies a day), what percent of those turn up polyps (it should be around 25% in men and 15% in women; much lower suggests that the doctor is missing some), and how long the scope is in the colon (colonoscopists should take at least eight minutes to withdraw the endoscope; too short a time suggests a hurried look).

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November 17, 2008

Legal Case Highlights Need for Annual Skin Checks to Prevent Deadly Cancer

A recent medical malpractice lawsuit prosecuted by Patrick Malone & Associates for the victim of a delayed diagnosis of skin cancer highlights the need for annual skin checks by a qualified doctor. Anyone who is fair-skinned, sunburns easily, or has a lot of moles on their skin should see a dermatologist or a good primary care doctor for annual skin checks. These can be part of a routine physical exam. The doctor should measure and do sketches of the moles' location and appearance on your skin, or should take good photographs. A change in a mole is one of the key indicators of potential for malignant melanoma, a skin cancer which is deadly once it gets into the bloodstream but is 100% curable when still confined to the skin. Patients and their families often don't notice subtle changes in a mole -- getting bigger, changing color, etc. -- that health care providers can pick up.

In the legal case of Semsker v. Lockshin, a benign mole on the patient's lower back turned into a deadly melanoma over an eight-year period, during which time the mole's presence and change in size was documented by the dermatologist. The lawsuit alleged the dermatologist should have removed the mole two years before it finally was removed, when it had already invaded the patient's lymph nodes. Mr. Semsker died 14 months after the diagnosis.

In their defense of the malpractice lawsuit, the dermatology practice of Norman Lockshin, M.D., P.A., contended that they would have told the patient to get skin checks even more often than he was (every few years from either his primary doctor or his dermatologist), although this recommendation was not documented in their records.

Regardless, every patient needs to know about the dangers of melanoma and the need for regular skin exams. Exams should focus on the ABCDE's of skin cancer: A for Asymmetry of the mole; B for irregular Borders; C for variegated Color or unusual color in the mole; D for diameter greater than 6 millimeters, and E for Evolution or changes in the mole's size, shape or color.

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August 31, 2008

New Ovarian Cancer Test Raises Doubts Among OB-GYNs

A new LabCorp blood test called OvaSure is aimed at early detection of ovarian cancer, but OB-GYNs doubt its efficacy and safety, as false positives might lead to unnecessary surgery and extreme anxiety. Ovarian cancer often goes undetected until later stages, by which point it can be too late to treat it effectively. A test that makes early detection more feasible would therefore be a wonderful thing.

From the article:

The need for such a test is immense. When ovarian cancer is detected at its earliest stage, when it is still confined to the ovaries, more than 90 percent of women will live at least five years, according to the American Cancer Society. But only about 20 percent of cases are detected that early. If the cancer is detected in its latest stages, after it has spread, only about 30 percent of women survive five years.

But far from greeting the new test with elation, many experts are saying it might do more harm than good, leading women to unnecessary surgeries. The Society of Gynecologic Oncologists almost immediately issued a statement saying it did not believe the test had been validated enough for routine use.

“You’ve got industry trying to capitalize on fear,” said Dr. Andrew Berchuck, director of gynecologic oncology at Duke University and the immediate past president of the society. “We’d all love to see a screening test for ovarian cancer,” he added, “but OvaSure is very premature.”

The test is good news if it is indeed valid, but raising false hopes and causing unnecessary procedures and stress is an adverse consequence of all this hype.

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July 31, 2008

Senator Kennedy's Health Care and Yours

It is instructive and interesting to read about Senator Edward Kennedy's treatment for his brain tumor.

The linked article describes the change in direction between May 20th of this year, when Kennedy's brain cancer was first disclosed and surgery was not discussed as a possible treatment, and two weeks later, when neurosurgeons performed a "successful" surgery on his brain.

Why the change? From the article:

Precisely why Mr. Kennedy’s treatment course changed is not known; he and his doctors are not talking to reporters.

What is known is that a few days after Mr. Kennedy learned he had a malignant brain tumor in the left parietal lobe, he invited a group of national experts to discuss his case.

The meeting on May 30 was extraordinary in at least two ways.

One was the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee — to summon noted consultants to learn about the latest therapy and research findings.

The second was his efficiency in quickly convening more than a dozen experts from at least six academic centers. Some flew to Boston. Others participated by telephone after receiving pertinent test results and other medical records.

As the article notes, Senator Kennedy called similar conferences of experts when one of his children was diagnosed with bone cancer and the other with lung cancer. He has been known to advise his colleagues in the Senate to use this method when dealing with an illness in the family.

Obviously, powerful senators can do things the rest of us cannot. Again, from the article:

Mr. Kennedy can tap leading doctors for answers in a way few patients could. His celebrity status aside, he has spent a career promoting insurance and other ways to improve the health of Americans. And he has had a track record of being thorough and diligent in researching medical options when relatives or friends have fallen ill.

Nevertheless, despite Kennedy's power and influence, there are ways in which the average person can imitate his example and seek second and third opinions on their medical care:

Several doctors not connected with Mr. Kennedy’s case said in interviews that they admired his resourcefulness in getting more opinions simultaneously. At the same time, these doctors said many average patients gained competent advice, without a command performance, by sending pertinent records to experts for their opinions.

Many patients search the Internet for medical information and ask that their scans and other data be sent electronically or by overnight services.

Then such patients visit, call or write the consultant.

The potential negative consequence of all this opinion-shopping is that people may focus on what they want to hear and disregard everything else. This is partly why the doctors quoted in the article strongly recommend actually meeting physicians whose advise you intend to take (rather than just sending records and receiving written responses). That way the physician can make sure your expectations are realistic and address your specific concerns.

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July 16, 2008

Cancer Survival Depends on Country and Race

Unsurprisingly, there are wide global disparities in survival rates of cancer patients. This is partly because of the relative wealth of different countries. However, there are huge disparities within the United States as well:

In the United States, the lowest survival rates are in New York City, except for rectal cancer in women, where Wyoming scores worse. The best survival rate for cancer in the United States is in Hawaii, the researchers found.

Idaho also has a high survival rate for rectal cancer, and Seattle has the highest survival rate for prostate cancer.

But, there's a big disparity in cancer survival rates between whites and blacks in the United States, and it favors whites. The differences range from 7 percent for prostate cancer to 14 percent for breast cancer. This disparity is most likely due to differences in the stage of cancer when it is diagnosed, the researchers said.

We have discussed the impact of race and region on health care quality before on this blog. Unfortunately, not everyone can count on getting the appropriate kind of service from their health care providers depending on their circumstances, as this new study re-affirms.

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July 15, 2008

Adults Slack on Vaccinations

Laura Landro, in her column "The Informed Patient," discusses the problem of adults neglecting to get vaccinated for new illnesses. Not only that, but adults forget or are unaware that some childhood vaccinations lose efficacy after some time and need to be re-done. Skipping pre-travel vaccinations is also a common error.

Part of the problem is insurance: not only is vaccination for the very young more likely to be encouraged, but it is also more likely to be covered by insurance providers.

The whole column is worth a read, but here are some disturbing statistics Landro cites:

-only 2.1% of adults are vaccinated for tetanus, diphtheria and whooping cough, despite the existence of a combination vaccine for all three.

-only 1.9% of adults have been vaccinated for shingles. The shingles vaccine is recommended for all adults over 60.

-only 10% of women from 18 to 26 have received the vaccine for human papillomavirus, which can lead to cervical cancer, and which most insurance providers will cover.

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July 2, 2008

Do You Really Need That CT Scan?

The NY Times has a long and informative article on the pressures physicians face to give patients with heart problems unnecessary CT angiogram scans, which are very expensive and not demonstrably more effective than cheaper tests.

Aside from the expense, the scans come with radiation exposure equal to as much as 1,000 chest X-rays.

Further, each scan creates an additional lifetime risk of cancer that is somewhere between 1 in 200 and 1 in 5,000, said Dr. David J. Brenner, director of the Center for Radiological Research at Columbia University. Younger patients and women are at higher risk.

Many patients do find it emotionally reassuring to get the results of these tests, since the CT scan allows the patient and doctor to actually see if the heart has any problems. However, perhaps part of the love of these tests stems from what Johns Hopkins professor of medicine Bruce Leff calls (in a letter to the NY Times editor) "gizmo idolatry":

As a geriatrician and health services researcher, I believe that the demand for cardiac CT scans is a textbook example of gizmo idolatry, or the implicit conviction that a more technological approach is intrinsically better than one that is less technological.

The other letters are worth reading as well.

Despite concerns about the efficacy of these tests, many doctors and patients swear by them and they will probably remain popular. As the article notes, Medicare decided to fund these CT scans despite lack of clear evidence of their usefulness, and private insurers will most likely follow suit.


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June 26, 2008

Detecting Ovarian Cancer Early

Tara Parker-Pope at the New York Times has an article on how to detect ovarian cancer early.

Ovarian cancer is usually detected in its late stages, when it is the least treatable. Early signs of ovarian cancer exist, but are very common and easily mistaken for other problem. For example, difficulty eating, or increased abdominal size, or feeling full after eating very little can all be signs of ovarian cancer--or of other, less serious ailments.

A new study, described in the article, finds that six key symptoms combined with a blood test can increase early detection of ovarian cancer by 20 percent. Those six symptoms are pelvic pain, abdominal pain, bloating, increased abdominal size, difficulty eating and feeling full quickly. The lead author of the study points out that any new and frequent occurrence of these symptoms may be reason for further testing.

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May 23, 2008

Advice from a Cancer Patient for Getting the Best Care

President Jimmy Carter's former chief of staff, Hamilton Jordan, died this week of mesothelioma after 24 years of fighting and surviving cancer four different forms of cancer. His memoirs include a top ten list of recommendations for cancer patients.

The whole list is worth reading, but in principle it could be boiled down to the first item:

No. 1: Be an active partner in the medical decisions that are made about your life. Don’t be passive. Learn about your disease, and participate in the decisions that are made….For example with my lymphoma, if I would have accepted the first treatment offered, I’d be dead today. It was assumed that I only had a mass in my chest. I later learned that the lymphoma was all through my body.

All of the other items on the list elaborate on this one, which is the most basic and the most important.

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May 16, 2008

Wishful Thinking and Procrastination Play Role in Delays of Cancer Treatment

Tara Parker-Pope discusses a Tower Cancer Research Foundation survey of 500 cancer survivors that showed more than half of them delaying treatment for two months or more after having symptoms. Fifteen percent delayed treatment for one to five years.

Some delayed treatment because of lack of medical insurance, or insufficiency of coverage.

But others had emotional reasons for the delay: a third of them put it down to procrastination, and the most commonly cited reason was that they were hoping the symptoms would just go away. Fear also played a role. Many patients simply did not want to be told the worst. These feelings are obviously natural, but acting on them can prevent the early diagnosis and treatment that saves the lives of so many cancer patients.

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March 21, 2008

Lawsuit Settled in Missed Colon Cancer Diagnosis

Recently on this blog, we discussed the difficulty of diagnosing colon cancer and the problems that can ensue from rushing the colonoscopy procedure.

A lawsuit over just such a missed diagnosis due to a hastily-performed procedure has been settled between the Endoscopy Center in Nevada, one of its doctors and a former patient who now is unlikely to survive the next five years. From the article:

Kevin Rexford, a 46-year-old pharmacist, said Dr. Clifford Carrol, one of the clinic’s owners, missed a obvious colon cancer diagnosis three years ago. The alleged failure allowed the cancer to spread throughout his body and he now has only about a 10 percent chance of living five more years. Rexford is married with two young children....Experts who were paid to review the case on Rexford’s behalf said Carrol took only three minutes — half the minimum recommended time — to examine Rexford’s colon for cancer during a Jan. 28, 2005, procedure. His missed diagnosis allowed the cancer to progress to an incurable stage, the experts said.

The consequences of such haste are clearly severe and patients should be aware of the risks, as we said in our earlier post.

The Endoscopy Center has also been in the news recently because it was shut down earlier this month because it was linked to six cases of hepatitis C.

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March 7, 2008

Easy-to-Miss Lesions Most Likely To Turn Cancerous

A new study of colonoscopy suggests that flat, hard-to-spot lesions in the colon are the most likely to become cancerous.

American doctors have been aware of these lesions for a couple of decades. But until recently, there was little reason to think that they were dangerous when occurring in America, although studies done in Japan did reveal dangers. This new American study showed that flat or indented lesions were five times as likely to be cancerous than as polyps, which are much easier for doctors to spot.

From the article:

People who have just had a colonoscopy should not rush to schedule another one just to look for the flat growths, doctors said.

“I don’t think people have to panic that they’ve somehow been neglected and had poor care,” said Dr. David A. Rothenberger, deputy chairman of surgery at the University of Minnesota.

But he and other experts emphasized that people should see a doctor any time they have persisting symptoms that could indicate colon cancer, like rectal bleeding or a change in bowel habits — no matter how recently they had a colonoscopy. The test is highly reliable, but not perfect, doctors say.

Furthermore, some doctors have a hard time spotting even polyps: as the article says, a December 2006 study showed that some doctors are 10 times better than others at finding pre-cancerous polyps, and the difference largely had to do with whether the doctor took care doing the procedure or attempted to rush things.

Unfortunately, it is always difficult and often impossible to find a doctor's track record on this issue. Again, from the article:

The difficulty facing patients is how to be sure their doctors are doing a good job. Professional groups have issued guidelines about the best way to perform a colonoscopy, but they are recommendations, not rules. The groups also urge doctors to track their own success rates at finding precancerous growths to see how they measure up to standards, but even if they do keep track, the doctors do not have to share the data with anyone. And many people are loath to ask about it. The doctor wielding the scope is the last person most patients would want to offend.

“The patient really has no way to act as an informed consumer,” Dr. Smith said. “You can’t call up a facility and say, ‘By the way, is my doctor any good?’ or, ‘Tell me who the best one is.’ ”

It is important to remember that not all doctors are offended by questions about their track records, and that giving offense is less important than safe-guarding your own health. This is especially true if you have a choice of which doctor to go to, because that way you will not be stuck with a health care provider who might have been offended by your inquiries.


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February 8, 2008

Scientists Conceal Raw Data from Cancer Studies

Most scientists are extremely unwilling to part with the raw data of the studies they perform on cancer and other life-threatening illnesses.

The author of the article speculates that this reluctance is due to convenience and careerism, specifically the fear of having others (especially layfolk) analyze their work and possibly find flaws in it. This may be an uncharitable speculation but it is difficult to disagree with, especially when one considers the pathetic reasons scientists cite for hiding their data. From the article:

Dr John Kirwan, a rheumatologist from the University of Bristol in England, has studied researchers’ attitudes on sharing data from clinical trials. He found that three-quarters of researchers he surveyed, as well as a major industry group, opposed making original trial data available. It is worth restating this finding: most scientists doing research on how best to help those in pain, or at risk of death, want to keep their data a secret.

Dr. Kirwan went on to ask his subjects why. Their reasons were entirely trivial: one cited the difficult of putting together a data set (wouldn’t this have to be done anyway in order to publish a paper?); another was concerned that the data might be analyzed using invalid methods (surely a judgment for the scientific community as a whole). This is something of a clue that the real issue here has more to do with status and career than with any loftier considerations. Scientists don’t want to be scooped by their own data, or have someone else challenge their conclusions with a new analysis.

As the author points out, however, new analyses are exactly what cancer patients (and patients in general) need. We all need all the information available that pertains to our health, so we can look at it and think about it and use it to safeguard ourselves. This reluctance to part with information is contrary to the spirit of scientific openness and inquiry. It is also unsafe and unfair to patients.

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January 25, 2008

Pill Reduces Ovarian Cancer Risk

Oral contraceptives significantly reduce risks of ovarian cancer in women, says a new large-scale study. The pill has been linked to reduction in breast cancer rates as well, but not so large as the reduction in ovarian cancer rates.

The risk reduction persists up to thirty years after a woman stops taking the pill, although it declines with time. The risk reduction is also stronger in women who take it for long periods of time.

Furthermore, as the linked article says:

The proportional risk reduction for every 5 years of use was 29 per cent up to 10 years of stopping use, 19 per cent for 10 - 19 years after stopping, and 15 per cent for 20 - 29 years after stopping.

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November 29, 2007

New Factors for Breast Cancer Risk for African-American Women

When breast cancer experts recently reassessed their risk-evaluation formulas, they found that they were significantly underestimating the risks for African-American women.

This reevaluation is likely to result in changes in counseling for women in this demographic, including more recommendations to go for mammograms and more encouragement to sign up for studies of breast cancer. This last change is highly important, as assessments of lower risk based on the old formulas meant that African-American women were not selected for studies such as prevention trials. More mammograms and participation in studies will lead to more early detection and prevention, hopefully reducing the number of women who believe themselves to be perfectly healthy and are then blindsided by a breast cancer diagnosis.

Reassessments like this highlight the necessity of researching diverse populations, to make sure that patient care is not compromised by ignorance of group-specific risk factors.

The abstract of this study can be found here: Projecting Individualized Absolute Invasive Breast Cancer Risk in African American Women

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August 17, 2007

Cancer Panel Critiques U.S. Government for Lack of Illness-Prevention

The President's Cancer Panel--consisting of Lance Armstrong, Dr. Margaret Kripke and Dr. LaSalle D. Leffall--says, in its new report, that the U.S. government should be doing more to promote environments and lifestyles that prevent cancer and other diseases.

Part of the report's argument is that most federal funding for cancer research goes towards genetic and microbiological solutions, and that macro-solutions involving environmental and social factors are neglected. This is part of a general problem in the philosophy of health care in the U.S., the report says: we are overly focused on treatment rather than prevention.

Of course treatments are important, but the report is right in its criticism of the neglect of the concept of a healthy lifestyle in U.S. health care. Making such lifestyles possible would require social changes as well as personal changes--which may be one reason why the government and our society finds it more convenient to focus on treatment, as treatment will not require systemic overhaul of society. It is more tempting to try and simply patch people up with treatments rather than take the time and effort to ensure that fewer people get sick in the first place.

Here are some examples of environmental and social factors that the report considers responsible for poor American health: lack of fresh food access, lack of access to healthy food in general (for those in poorer socioeconomic conditions), large subsidies to producers of corn and so which are processed into foods that contribute to various diseases, lack of opportunity to exercise and lack of health insurance.

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August 3, 2007

Cancer Patients Face Confusing Obstacles and Inconsistent Treatment

A diagnosis of cancer puts a patient in an extremely frightening and vulnerable position. Unfortunately, there is often little aid for people in this situation. Instead, they are presented with bureaucratic hurdles and confusion about whose advice to follow.

For an example, one could look at the July 29th, 2007 New York Times Magazine section which had an article describing the story of one such cancer patient named Karen Pasqualetto.

There are several insights that can be gleaned from such experiences. First, there is the need for patients to seek second and third opinions—a need that usually goes unfulfilled because most people do not have the insurance or financial resources to cover this.

Second, patients need to educate themselves on standards of care, because otherwise they probably will not be getting it—particularly if they are not white or are low-income. See the National Healthcare Disparities Report from 2005 for disparities related to race and socioeconomic status. The ScienceDaily also has an article about racial bias resulting in poorer treatment for African-American patients.

Third, there are enormous advantages to having a team of doctors who speak to each other rather than a bunch of disconnected specialists who offer competing and contradictory advice. Patients should encourage communication between doctors as much as possible.

Fourth, visiting centers for the study of particular kinds of cancer can be extremely helpful, especially when dealing with the more obscure varieties of the disease. These centers have the aid and cooperation of several doctors, so the opinions given there are more likely to reflect a consensus of experts.

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