false_alarm
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25 percent. In thyroid and prostate cancers, however, the !gures are even higher, he says. Essentially, cancer is de!ned as abnormal cells that divide without control and are able to invade other tissues or parts of the body through blood and lymph systems. But the rate at which these abnormal cells divide and spread is dif!cult to determine and depends on myriad factors well beyond the organs that are affected. In other words, simply having cancer, counter to common belief, does not necessarily mean that it will kill you or even pose a health problem. It is estimated that every second, mil-lions of cells in our body divide, copying their DNA. Biologist and cancer researcher Robert Weinberg, of Massachusetts Institute of Tech-nology, notes in his work that with every cell division there are imperfections. If we lived long enough, Weinberg states, we all would eventually get cancer. In the last two to three years, a move-ment has been building in oncology that not all cancer needs to be treated; in fact, some cancers are not cancer at all. At odds with this are hypersensitive screening technologies that can detect the smallest and in some cases the most harmless lesions. But research shows in some cases that cutting-edge screening has not affected mortal-ity rates, and some tumors that were treated were actually indolent, meaning they either would have stopped growing or grown very slowly. Some untreated tumors even regress on their own. But the treatments used to eliminate them can leave lasting health problems. An article published last May by the world’s leading medical journal, Lancet Oncology, outlined the pervasive problem of overtreating and overdiagnosing cancer. Indo-lent disease, the article states, accounts for 15 percent to 75 percent of all cancers, depending on the organ affected. Chunkit Fung M.D., a medical oncologist at Strong Memorial Hospital, says a deeper understanding of the biology of a particular cancer is required to better predict how it will behave. A classi!cation system, he says, needs to be developed that is based on the genetic mutations each cancer has. That way treat-ment can be personalized instead of simply grouped by the organ affected. “I think the discussion is not about just screening, but also about are we overtreat-ing some of the cancers, such as prostate cancer, which is a very low, indolent disease
that might not even cause any problems in some patients. But at the same time, we don’t really have a good way to stratify (cancers) to determine what are the really aggressive ones that can really cause problems for patients, not just in prostate cancer or breast cancer, but in many different cancers,” Fung says. Thyroid cancer is one example where im-proved screening technologies did not improve outcomes. From 1975 to 2009, the incidence of thyroid cancer tripled, but the death rate re-mained constant, Lancet’s article shows. When the incidence rises and the death rate is "at, that’s how you can tell overdiagnosis is going on, Brawley explains. The increase in incidence in thyroid cancer is due almost entirely to the ability now to detect small cancers less than 2 centimeters, which previously went undetected, and now often get treated even though they most likely will never grow. In prostate cancer, 20 percent to 70 per-cent of patients are said to be overdiagnosed. Brawley suspects the !gures are probably 50 percent to 60 percent. “In the case of prostate cancer, I’m re-ally frightened that a large number of men have not been truly informed about what we know and what we don’t know,” he says. A man who gets treatment for prostate cancer believes it is because of that treatment that he is still alive, when the chances are more likely that he is a victim of overtreatment, Brawley explains. “They have the misconception that prostate cancer screening is better than it actu-ally is,” he says. For example, 90 percent of glandular prostate cancers, many of which may have been found to be inconsequential cancers, are treated with radiation or surgery, Lancet’s article states. For 15 percent to 20 percent of these cases, sexual, urinary, and gastrointesti-nal side effects result. Occasionally, the Lancet
article notes, radiation treatments to stop a cancer that never would have caused harm will lead to future, malignant cancer that will; repeated biopsies can lead to sepsis in men, increased costs, and emotional and psychologi-cal disruption for patients and their families. In the case of Rochester local Connie Kenneally, the treatment offered for her stage IV renal cancer could have left her severely debilitated. Kenneally got her metastatic diag-nosis in late 2011, when there was little to no support for a wait-and-see approach. But what if her doctors were wrong, she wondered, and the cancer did not progress? Most people, Kenneally says, will do ex-actly what their doctors tell them. It’s certainly what her brother and some of her closest friends urged her to do. “One of my friends said, ‘For once, can’t you just do what you’re told,’” Kenneally recalls. Instead, Kenneally set out to get some evidence whether her tumors, which at the time cumulatively measured slightly more than 6 centimeters, would likely grow. To !nd out if her tumors might be indolent, or slow-grow-ing, as she suspected, she researched many avenues, including genomic testing companies, immediately after her diagnosis. Through test-ing to determine her genetic alteration, a few studies suggested she may not have the gene mutation that would indicate an aggressively growing tumor. Kenneally enrolled in a clinical observa-tion trial at Cleveland Clinic and was able to avoid toxic treatments. Instead of facing a life sentence, Kenneally, through objective, cool-headed research and testing may or may not have saved her life, but at the very least she saved herself from the damage acutely toxic treatments would have caused. “My issue is that no one considered indo-lent tumors until Brian Rini at the Cleveland Clinic put it on the table. It was clearly not an option. That is my issue,” Kenneally says. “Drugs are always the primary answer to can-cer when you see an oncologist, just as surgery is the primary answer when you go to see a surgeon.” At any point following a cancer diagnosis, doing what is right is hard to know when the cancer itself might grow fast, slow, or not at all. Undertreating, for physicians as well as patients and their family, is often scarier than overtreating. Physicians, for example, might be sued for undertreating patients if the cancer wors-
“Since we were on our mother’s knee that
cancer was bad and that the way to deal with it is to !nd it early and cut it out. Now we’re changing the rules.”
FALSE ALARMDUTIFUL SCREENINGS AND HIGHLY ADVANCED TOOLS ARE DETECTING CANCER EARLIER THAN EVER. BUT IS THAT A GOOD THING? SOME EXPERTS SAY NO.
By Mary Stone
Seated in the silence of a physician’s of!ce, a patient who hears the word ‘cancer’ will feel his stomach lurch and his heart race as he !nds himself in one of the most dreaded, and
increasingly common moments of modern life. To many minds, a cancer diagnosis equals a death sentence, which generally is followed by an urgency to pursue the most aggressive treatment available, often with the aim to eradicate the cancer—no matter how toxic or harmful the treatments. But what if that visceral reaction the word cancer elicits—not only from patients, but from their loved ones and physicians as well—was more harmful
than the cancer itself would ever be? Much of the fear stems from the assump-tion that cancer grows, which is not always the case. Combine this assumption with in-creasingly sensitive screening equipment, and we quickly !nd ourselves treating more cases than necessary, experts explain. Otis Webb Brawley M.D., chief medical and scienti!c of!cer and executive vice presi-dent of the American Cancer Society, has spo-ken out about the need to rede!ne cancer and the methods with which cancer is diagnosed and treated. “Keep in mind, we in the United States have been taught since we were on our moth-
er’s knee that cancer was bad and that the way to deal with it is to !nd it early and cut it out,” Brawley says. “Now we’re changing the rules. Some cancers are good and they can be watched. Some cancers don’t need aggressive treatment. Some cancers, we can watch and if they seem to be growing then we can increase the aggressiveness of our treatment.” Lung cancer is but one example. It is esti-mated that lung cancer is overdiagnosed in 10 percent to 18 percent of screenings, Brawley says. The rate of overdiagnosis for breast cancer is estimated to be much higher at up to 50 percent of cases, but Brawley believes the !gures are probably closer to 20 percent to
Issue 9 January / February 2014 | POST 3332 POST | Issue 9 January / February 2014
ens, but they are not held accountable for overtreating. That might be one reason why observation is not something that patients are usually offered as a stand-alone treatment paradigm (without drugs), Kenneally says. The urology oncologist behind the indo-lent tumor trial at Cleveland Clinic, Brian Rini M.D., says only 5 percent to 10 percent of the patients he sees quali!ed for observation with-out treatment. Some of the approximately 50 patients enrolled in the trial needed treatment within three to six months of observation. Of the original 50, there are between 15 percent to 20 percent, Kenneally says, who still do not require treatment they otherwise would have received. Kenneally is one of them. “There’s not a lot of data out there, which is why we did the study,” Rini says. Most of the patients in the study were eager to delay treatment or avoid it altogether, Rini adds. In Fung’s experience, however, most patients im-mediately want to pursue the most aggressive
treatment available. “When we think about the word cancer, it really scares not just the patients but actually physicians, and that drives some of their fears and overtreatment,” Fung says. A cancer diagnosis has an emotional impact on patients, their family, and friends. Even aside from overtreatment, the mere word ‘cancer’ produces a degree of anxiety, fear, and depression. There are other effects as well. “No matter how minor the cancer, that person all of a sudden, with the label of being a cancer patient, is going to miss work more often and have many more health issues just because of the label,” Brawley says. Now, however, there is a movement under way to change diagnostic terminology so that indolent lesions no longer are called cancer. The goal of the change is to limit some of the fear that pushes people to pursue unnecessary treatment. The Lancet study in May proposed the term “indolent lesion of epithelial origin,” or IDLE to replace the word cancer for those
lesions that are unlikely to cause harm if left untreated. The study’s authors say that precur-sors of cancer should not have the term ‘can-cer’ attached to them; screening guidelines also should be changed to lower the detection of inconsequential cancers and low-risk IDLEs. While Rini thinks there will be little to be gained from a change in terminology, Fung believes it is a wise, albeit monumental, shift. “We really understand that indolent le-sions are most likely not going to cause any problems in the near future or during the patient’s lifetime. I think there’s a justi!able reason (to change terminology) because I think hearing the word ‘cancer’ really gets the pa-tients, I mean, instills a lot of fears in them—
even for physicians,” Fung says. “They feel like they have to treat the patients right now. We have to cut (the cancer) out even though there might not even be any survival bene!t, and may actually cause more harm and side effects.” Such a paradigm shift will involve a lot of levels of the medical establishment, Fung says, and will require a long nationwide rollout. Still, he says, it is necessary. A growing number of physicians, scientists and other advocates of diagnostic reform agree. In March 2012, the National Cancer In-stitute convened a panel of experts to evaluate the problem of cancer overdiagnosis, which NCI describes as the process of detecting and treating harmless tumors as if they were harm-ful, sometimes leading to patients’ death or to
long-term injury. The panel is seeking methods to help distinguish between the deadliest and most harmless cancers for more tailored treat-ments. To reach this point, advocates propose that patients with cancer that is of low or un-certain risk enroll in observational registries, not unlike the observational study Kenneally found. Perhaps most important, the widespread belief that repeated screenings deliver better outcomes needs to be changed. Diagnos-tic testing also needs to be limited, reform advocates note. New models of how cancer progresses must also be developed. But to do this, a better understanding of the microenvi-
ronment and genetics of tumors is needed to better predict their development. Our whole understanding of cancer, Braw-ley says, has to be updated to include genetics and genomics. “(The new de!nition) will take into ac-count not just morphology, or what it looks like under a microscope, but genetics, which is one gene, and genomics, which is how a bunch of genes interact with each other,” Brawley explains. There are 5 millimeter tumors, where the genes inside program it in such a way so that it will never grow or spread, and it will never kill, Brawley says. There are other 5 millimeter tumors with genetics that will make the tumor progress, spread and kill. The one that doesn’t spread is the overdiagnosed cancer we don’t
need to cure, he says, while the cancer that kills needs to be found and treated early. “Quite honestly, we have a 19th century de!nition of cancer right now, despite all of these technologies we’ve developed over the last 150 years. What we really need is a 21st century de!nition of cancer. A 21st century de!nition is not: ‘This looks like cancer,’ but ‘This is what the genes inside of the cancer actually intend for this tissue to do.’” To make it easier to identify cancers, more data on the behavior and genetics of tumors must be collected and shared between institu-tions. At least one company is looking to offer that capability. A new health care technology
company called Flatiron Health is building the !rst Web-based data platform to provide ac-cess to anonymous patient oncology informa-tion from institutions across the United States. The company, funded in large part by Google Ventures, is collecting research, clinical infor-mation, cancer care guidelines and treatment patterns, among other data, that one day, it is hoped, will provide clinicians with a better, more targeted menu of treatment options. “Flatiron, in my opinion, is going to revolutionize oncology,” Kenneally says. As a business executive specializing in funding life science startups, Kenneally is well-positioned to recognize Flatiron’s potential. She has introduced the Cleveland Clinic to the Flatiron idea in order for doctors and patients to make faster, more informed decisions based on
larger data observations on patients. “I don’t want to say that cancer data is often composed of islands of information within each oncology practice, but that’s how I see it,” she says. “Some of this observational data gets published within studies and some doesn’t,” Kenneally says. But many patients don’t have the luxury of waiting until the patterns are available to lead to more informed treatment decisions.” Today, Kenneally is using what she has learned as a patient along with her skills in raising early-stage capital to get more life science and medical startups the necessary partnerships to bene!t patients like her. New
technology, massive data collection, analy-sis, and an updated method of interpreting screening and testing results are all required, Kenneally explains, for oncologists to be able to abandon what often seems like a one-size-!ts-all approach. But changing the way cancer is considered is going to take a long time, Brawley says: “There is a group of people who don’t want it to happen,” he says. “I see people with DCIS (a type of breast cancer) who are offended that a committee might want to decide that they didn’t have cancer. Then there’s the group who are so frightened by the word cancer that they feel everything must be done to treat it. “There has to be a change in our mindset and in our understanding of cancer, and some doctors are just as bad as patients on this,”
Connie Kenneally, local entrepreneur and cancer survivor
Brawley says. While some doctors are fearful of litiga-tion for undertreating patients, others !nd that the limitations of screening are too complicat-ed to explain to patients, he explains. There’s also a more basic inability to change. Brawley says: “We’ve seen some panic and lack of appreciation of science regarding Ebola and health care workers recently; I see that regularly in terms of cancer—a lack of appre-ciation of scienti!c fact, a certain amount of fear, and the end result being some behaviors that are sometimes very harmful.” Fung agrees. “When you change the national guideline, any policy shift is going to take time, but I think within the health system, we also have the responsibility to make sure that we cause no harm,” Fung says. “I mean, that’s !rst: We
do no harm. And if we think that overtreating cancer would cause a problem in the patient, we are actually causing some harm.” Kenneally has seen this !rst hand. She recently watched a friend suffer, in no small part, from the same program Kenneally declined to follow. Her friend, whose cancer did progress, recently died. Kenneally now wonders how much the treatment contributed to her suffering and whether the months by which the treatment extended her life were worth the pain. “A year ago we were walking along the canal path in Pittsford having ice cream. (Now) she’s dead. So, you look at that. Now, her cancer had a faster growth rate, so she wouldn’t be going down an observational path, but you know she had her kidney out. She had a tumor removed, and they gave her all that caustic treatment, and you know, it just makes me wonder...”
Chunkit Fung M.D., medical oncologist at Strong Memorial Hospital
“One of my friends said, ‘For once, can’t
you just do what you’re told.’”
“And if we think that overtreating
cancer would cause a problem in the patient, we are actually causing
some harm.”
34 POST | Issue 9 January / February 2014
WY: I think from my past dealings with physi-cians and patients that sometimes the physi-cian wants to do more than they really should. And sometimes the patient wants them to do more than they really should. It’s not always the physicians that want to over-treat.POST: It’s a real dilemma, isn’t it? WY: Yeah, and it’s invasive. Our problem is that we don’t yet have the ability to look at these cancers and determine for each patient exactly what should be done. We don’t have the tools yet. We’re getting there. They’re doing DNA
analyses on these tumors, and they’re going to come out with a lot of information that will make a big difference in terms of whether we treat or not. But right now we don’t have that information. So your mother (for example), if she’s got something that was picked up in a mammogram, you can’t believe what people say because you don’t know. We don’t know enough yet about the different cancers’ DNA to be able to predict whether she has the type that’s going straight to the brain, or whether it will just sit there and still be there when she’s dead.
POST: Right. But doctors have this obligation to do no harm. I’m sure it’s got to be very difficult for them to abide …WY: They have an obligation—they do have an obligation, but there are some (doctors) who treat with radiation or chemotherapy who are swept away by the patient’s desire to try to do something. And then, of course, you have these anecdotal situations where people actually get better. I think the main problem we have right now is that we just don’t know enough about how to predict how the individual cancers are going to behave. And we’re at a disadvantage because we can’t get the patient statistical numbers or we can’t give the patient enough information to let them know exactly what their prognosis is with or without treatment. POST: It sounds like the screening technology has come so far that it’s detecting things that might never have been detected before and might never have caused a problem. Now, so much is being detected, but we’re not detecting quite enough that we can discern which is really going to cause a problem or not. It seems like we’re nearing a tipping point where we’re going to be able to discern how an individual cancer will behave. Are we years, decades or …?WY: No, I think it’s more like years. I think within five years, there’s going to be a lot of breakthrough in terms of figuring out how to figure out the DNA. I mean the DNA field is just bursting wide open at this point. We may have a lot more information in five years that will help us sit down with patients and say, “We have a pretty good idea what’s going to happen with and without treatment. These are the treatments, here are your chances of making it through treatment without any problems.” I mean we keep get-ting better and better at it, but right now a lot of it is we’re just going by the seat of our pants in terms of how the tumor is going to behave with treatment, whether or not we should even do it. POST: So (after a biopsy shows cancer) once you refer them to the sur-geon, what are the chances (the patients are) going to be operated on?WY: We don’t send them to the surgeons unless they need surgery. I’ve never sent a patient to a surgeon and have them not be operated on, because we’ve already made the …POST: Once you discover cancer, I mean, at what point do you send patients to them? Once you find out it’s malignant, even though you don’t know its propensity to grow or how it will behave, you still …WY: Well, if we make the diagnosis, I was just telling you why we don’t feel a patient should not be treated, because we don’t know enough about the DNA of that particular tumor to know whether this is going to be the person who, you know, has it go directly to the brain or lung or liver or whatever.POST: You don’t know at which end of the spectrum they’re going to be.WY: That’s right. We don’t know because we don’t have that DNA knowl-edge, nor does anybody in the government. And it’s so irritating to hear them say, “Well, not all of these need to be treated.” Well, the only way you find that out is by following the patient to the end of her life. You know, don’t treat anybody and follow them all to the end of their life and find out who died, who didn’t. There’s no way—you can’t say to the patient, “You might be one of the lucky ones,” because you don’t know if they are.POST: But in five years maybe.WY: I’m hoping that within five years, people can get DNA testing of their tumor that will tell them—give them a pretty good idea—about what they should do.
–Mary Stone
A Local Expert’s Take On Cancer Screening
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As founder of one of the !rst freestanding breast cancer diagnostic centers in the country, Elizabeth Wende Breast Care, Wende Young M.D. has seen the evolution of screening technology and knows the advances it has yet to make. Over nearly 40 years, Young’s experience with patients is equally vast, yet their reactions to a cancer diagnosis have changed very little. Many patients, she says, want to go for broke in their treatment regardless of the cost to their health.
POST: Can these people pursue some sort of genetic testing on their own to get a better idea?WY: There are some facilities in the country that can take cancer and can analyze it to do a DNA analysis on it to find out, to get a complete readout on the DNA. And they’re beginning to do some preliminary work now with these cancers in terms of incubating them in cells and getting antibodies that can be injected into the patient. And there are some weird cases of multiple myeloma that have a certain genotype that they’ve been able to re-produce and find antibodies to and cure these people, but these are a very small part of the population.POST: I am curious, what do you advise people? WY: I think it’s very, very hard. People do ask me what to do lots of times. I think that the type of treatments that people are offered for their cancer treatments are interpreted dif-ferently by patients depending on how much they want to live. There are times when people want inappropriately to try everything they can possibly try against something that is a Stage IV cancer that is throughout their body, and their chances of making it are very slim. I would advise those people to do palliative care, to get the best out of the remaining time that they have. But the patients won’t always listen to what we say. I think the thing that doctors really need to know—need to be counseled on—is how to talk to patients who have cancer and try to determine the best treatment for them, but they have to expect the fact that some patients are going to want to go for broke no matter what they say. POST: It’s causing them more harm than the cancer would. WY: Yes. Because they are so determined to do everything that they possibly can. It doesn’t make sense, but the way the medical system is set up now they’re very—I know there’s virtually no doctor who will tell the patient, “No, we really can’t do this for her. I refuse to do this because it’s not appropriate.” That’s not being done now. I mean we have to educate the people to not go for broke, and we have to educate the doctors to accept the fact that even though it’s not appropriate, some of the patients are going to insist on it. And you’re sort of helpless if they want to do this, if they want to go for it, because it’s—if you say, “No, I won’t do it,” they’ll just go to somebody who will.