Breast Cancer’s false narrative.


Here we go again. Another October, another flood of pink ribbons. Don’t get me wrong. I hate breast cancer. I want it gone. Three of my aunts have breast cancer, and the disease killed a dear friend of mine. So it pains me to see the science of breast cancer so often misreported by the media.

The problem starts with the basic narrative. As I wrote last year in Miller-McCune:

For years, women were taught the necessity of early detection for breast cancer based on the notion that breast cancer is a relentlessly progressive disease that will inevitably kill you if you don’t remove it in time. That story about breast cancer — call it the “relentless progression” mind model — is easy to grasp, makes intuitive sense and offers a measure of comfort: Every cancer is curable as long as you catch it in time.

But it turns out that this mental model of breast cancer is wrong. Science has shown breast cancer to be far less uniform than the relentless progression model suggests, says H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice in Lebanon, N.H., and author of Should I Be Tested for Cancer? A more accurate description might be called the “uncertain future” model. Instead of starting small and gradually growing and becoming more dangerous, cancers can behave in a variety of unpredictable ways.

As scientists have learned more about tumor biology, they’ve come to understand that it’s not size or time alone that determine a cancer’s lethalness. Instead, each individual cancer behaves in its own way, based on a variety of factors, including genetics and hormone receptors, that scientists are still trying to understand. In general, most breast cancers fall into one of three behavior categories. Some are so aggressive and fast spreading that our current treatments can’t alter their course. Others start out not so dangerous and then grow more aggressive with time (or the right environment), and the third type of breast cancer is slow to progress and essentially harmless.

We still can’t distinguish an aggressive one from a harmless one, except in retrospect. Some early stage cancers will come more aggressive and harmful with time, but others will never progress.

Yet that’s not the message you hear in so many of the news stories that proliferate like cancer each October. A large number of these stories promote the now-debunked relentless progression model, with a twist of self-empowerment thrown in. Their message — all breast cancers will kill you, unless you’re vigilant enough about screening and catch that cancer “early.” It’s up to you, ladies.

As Rachel C. notes over at author Gayle Sulik’s blog, Pink Ribbon Blues, magazine stories about breast cancer “all seem to be good news stories; about how mammograms saved their lives, and how they’ve gone on to embrace the mantle of triumphant survivorship after so-called successful treatment.”

I’ve written about the limitations of mammography (and the mammography debate) elsewhere, but the bottom line is, mammography is an inefficient method for detecting breast cancer. It’s much better at finding the indolent cancers that would have never caused harm than it is at finding the nasty, aggressive ones most helped by treatment. Statistics show that for 2,000 women screened by mammography over 10 years, one will be prevented from dying of breast cancer and 10 others will receive treatments for a cancer that would have never become life-threatening. That means that screening causes 10 times as many women to become cancer patients unnecessarily as it prevents from dying from breast cancer.

Yet this message about the risks from mammography is often lost in the rush to save lives. Television stations, newspapers and magazines run stories about breast cancer survivors who are out urging women to get mammograms so that their lives can be saved too. Each woman is entitled to her opinion about whether a medical test helped her, but if her cancer was detected by a routine screening mammogram, then the statistics show that it’s more likely that the cancer never threatened her life in the first place. Her survival isn’t a miracle, it’s a given. The treatments she is so grateful for were unnecessary.

Welch calls this the overdiagnosis paradox. “The more overdiagnosis the test causes, the more popular it is because there are more survivors,” he says. “The person who had a breast cancer diagnosed by mammography  is tempted to view herself as being helped, but there are two other possibilities that are more likely,” he says. The first is that the person would have fared exactly the same without the mammogram, and the second is that the cancer the mammogram diagnosed was indolent and did not require treatment. “I always hope that the person who found cancer via mammography was helped,” says Welch, but on an individual level it’s impossible to say which category an individual person falls into. Statistically, the vast majority fall into the overdiagnosed category.

But you won’t hear any of this in those stories with headlines like, “Screening is what really counts for the cure.”

I’m not anti-mammogram. But I believe that medicine should be based on science, not wishful thinking. Women who want mammograms should have access, but only after they’ve been fully informed of the risks as well as the benefits. If my experience interviewing oncologists and radiologists is any indication, most of these doctors don’t understand the risks. More often than not, when I interview a radiologist, breast oncologist or gynecologist they tell me that the only risk from a mammogram is a false alarm. I think it’s the job of journalists to challenge these false messages.

Celebrity Wanda Sykes was recently diagnosed with ductal carcinoma in situ.  DCIS is a scary diagnosis.  Most cases of DCIS will never progress to invasive breast cancer, but some of them do, and there’s no way to tell yet if yours is the bad kind. If you’re the one with the diagnosis, you don’t want to be that statistic. Each woman must make her own treatment decisions, and she has every right to make choices that are in line with her values. Sykes chose a double mastectomy, and that’s her decision to make. But she did a terrible disservice to TV viewers when she told them, “I had both breasts removed and because now I have zero chance of having breast cancer.”

This is simply not true, as Karen Kaplan reports in the Los Angeles Times . A prophylactic mastectomy reduces breast cancer risk by about 90 percent, which is not the same as eliminating it.

Which gets to the ugly, ugly truth that no one wants to talk about. There is no certainty with breast cancer. Once you have it, there is always a chance of recurrence. There is nothing a woman can do today —not even cut off her breasts — to completely eliminate her chance of dying of breast cancer. Despite the headlines in those women’s magazines, there are no foods that “fight” breast cancer. Exercise, a healthy diet, limiting your alcohol consumption might reduce your risk, but only a little. Breast self-exams do not reduce breast cancer deaths, no matter how well you do them.

A woman does not get cancer because she did something wrong or wasn’t vigilant enough about screening. Nor does a woman survive breast cancer because she’s a “fighter” or has a positive attitude. If she survives it, it’s because she was fortunate enough in her misfortune to get a type that responded to treatment.

Today, an estimated 150,000 Americans are living with metastatic breast cancer, but their stories are rarely the ones featured in the happy face articles. This October 13 is Metastatic Breast Cancer Awareness Day. I think it’s high time we gave these brave women (and men) their due.




Lollipops: wishuponacupcake

Big pink ribbon by Jason Meredith

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42 thoughts on “Breast Cancer’s false narrative.

  1. Thank you for writing this informative piece. As you so clearly pointed out, there is much falsehood in today’s breast cancer narrative. You also hit upon one of my biggest pet peeves, the positivity thing. A postitive attitude does not determine survival and putting this added burden on a cancer patient to always remain positive and fight their cancer “properly” is just wrong. Thank you again for writing this.

  2. Powerful piece. One of the things that troubles me is “the just one life” fallacy so many make. It argues that the one person saved in your example is worth the 10 women troubled for an indolent cancer and the 1989 women exposed to extra doses of needless x-rays. At some point we need to make judgments on the cost-benefit ratio of medical care. Unfortunately this is all too often seen as rationing, but there are scarce resources. I just don’t understand why judgments are bad in health care but okay everywhere else. If we made cars so that their top speed was limited to 30 mph, we would save a huge number of lives, but a lot of people would also be inconvenienced, and we have made the judgment that our convenience is worth the 9/11 we have every month on our roads. In this case, though, as you point out, it’s not just an economic problem, it’s a question of clinical decision-making. The general public thinks in terms of “symptoms-test-results” when the reality is that a multitude of considerations weigh on the clinician while s/he is making a decision. Prevalence of the disease, sensitivity and specificity of the tests, and treatment outcomes have to be considered. If medicine was easy we wouldn’t need much more than barber-surgeons delivering our health care.

  3. I’m glad you made mention of men in this piece – that’s another thing that gets left out of the narrative all the time. A man who worked for my parents died from metatastic breast cancer. It was pretty awful, certainly not a happy survivor story that makes for good press. All of the hype around mastectomies and buying pink products seems like it has really taken the focus away from where it should be, which is finding a cure instead of a prophylactic.

  4. Thanks for the excellent post. The National Breast Cancer Coalition has been fighting the tide and trying to change the focus away from mammography screening as the solution for the last 20 years. I encourage readers to look at our 2011 Progress Report online to see where the emphasis on screening has gotten us. Though the incidence of DCIS has gone up exponentially, the incidence of Stage IV disease has remained constant for over thirty years. We declared Breast Cancer Deadline 2020 last year to help refocus efforts where they will have the most impact on ending the disease. We believe those efforts should be toward understanding metastasis and how to prevent, and on understanding how to prevent the disease from developing in the first place.

  5. If mammography is ineffective, what diagnostic tool should be used? Surely you can’t just wait for someone to notice a lump, or keel over from cancer-riven organs. How do you combat breast cancer if you can’t detect it?

  6. I disagree with this statement: “Breast self-exams do not reduce breast cancer deaths, no matter how well you do them.” My mother discovered a lump during a BSE, saw her doctor the same day, and was in with an oncologist before the end of the week. She was successfully treated, thanks in part to being included in the final trials for Herceptin; later tests indicated that she had the gene for aggressive BC (her aunt died of it; her first cousin is another survivor), and the oncologist attributed her recovery and still-excellent prognosis to the combination of early detection and Herceptin, in addition to the standard surgery/chemo/radiation protocol.

    I’m therefore confused about the purported inefficacy of BSEs. The link provided to support your statement doesn’t make any sense to me either. Could you please explain further? Is it simply a matter of statistics? Additionally, should I, as a middle-aged man, forgo my quasi-monthly testicular self-exams?

  7. By the way, I think your comments about “positive attitude” being unhelpful are, frankly, unhelpful. I have chronic major depression (to the point where my psychiatrist and I are discussing ECT), and I get sicker more often and more severely than anyone I or my circle of friends know. All of my “vacation” time this year, including the rest of 2011, has been consumed by illnesses, everything from bronchitis to shingles to migraines. My mother, thankfully, was not the parent from whom I inherited the “depression gene” (and yes, it’s self-evident from my father’s side of the family that such a thing exists, and that I have it); her spirits remained bright. Studies have shown that depression sufferers have higher rates of M&M for everything from cardiac problems to diabetes. Your comments here?

    (By the way, I’m not trying to be a jerk; I’m genuinely interested in the science or math behind your statements.)

  8. great post, so true that there is no certainty. The impact of attitude is not at all clear, I think. Positive attitude is helpful, in many situations – having gone through chemo and rads over the past 10 months, I found that dealing with the inevitable anxiety and depression that arises made it easier to get through my treatment. I think a positive attitude increases self efficacy, self compassion etc. But we don’t really understand the mind body connection, do we?

  9. Thank you for this fantastic article. I would take one small issue — the link to the Cincinnati Enquirer article. While it might not have had the downside of screening listed, it also is calling for empowered and informed patients (vs all the pink stuff). I think there are better examples of poor journalism.

  10. My oncologist made it very clear that she did not expect me to “be positive” and that it was her job to try to cure me no matter what my attitude. She did indicate that being stressed out had an impact on the immune system and therefore I should try to reduce/eliminate stress. But when well-intended people have told me “Be positive” I have found it profoundly unhelpful. It is hard not to hear “because if you’re not, you’re going to die; because it was your attitude that got you into this jam.” And the reality is that thousands of “positive” women have died of this disease through absolutely no fault of their own.

    I’m kind of a fan of self-exam, myself. But it too, has its limits. Some breasts and some tumors lend themselves to discover through BSE more than others.

  11. Thank you for such a well-written article on a topic that is somewhat taboo in the world of ‘pink survivorship.’ As a woman who has had breast cancer, and is mercifully NED (no evidence of disease) at this time, I will be sharing this article with all my family & friends who don’t understand my abhorrence of Pinktober.

  12. Sobering and well written. Have lost a dear friend this year to BC. In my country (India) there is very little awareness and poor access to screening. In resource poor settings, the real value of these modalities should be judged only on solid science! But so often, the decisions are driven by soft science or commercial interests.

  13. @Hass, there was a study (not a small study… this one involved >250,000 women) that showed that directed breast self exams uncovered no more cancer than incidentally “found” lumps on the breast but increased the number of biopsies by over 50%. Clinical breast exams where an experienced clinician spent at least 3 minutes per breast were marginally better than self-exam. In general, the trouble with screening is that it tends to be more expensive than most realize. Imagine you pull a sample of 10,000 women of the right age to have breast cancer. Current incidence rates say that 12 of those women will have breast cancer. Mammography has a roughly 10% false positive rate and a roughly 20% false negative rate. This means that of the 12 women you test that have cancer, 2-3 who have cancer will receive a wrong clean bill of health. Of the 9988 women who are cancer-free, 999 will have a positive result that’s not true. The chance of someone getting a positive result and not having cancer is the number of true positive, 10, divided by (the number of true positives, 10, plus the number of false positives, 999). So a positive mammogram still means that a woman has a 99% chance of not having cancer. However, these false positives will undergo the same work-up (follow-up mammograms, biopsies, etc) because clinicians can’t just look at the back of the book to find the answer. With this hypothetical, we had to do 1000 screenings to save one life (this is with a perfect cure rate for found cancer and a perfect score for untreated cancer to cause death… in reality, depending on age this number is higher, 1300-1700 screenings per life saved). In our hypothetical, each life saved cost $100,000 (for a mammogram cost of ~$100 per plus increased x-ray exposure) plus the costs of ~100 biopsies (variable monetary cost + psychological cost of living with fear until the result). We can’t even look at this analysis in terms of the self exam… even though it’s free we have no idea how many “negative” exams miss cancer and we can’t even be sure of a specific false positive rate. (For what it’s worth, in my opinion, I can stomach paying that much to save a life)

    One of the biggest problems with screenings in general is that they give us a false sense of security and a false sense of “being proactive” towards our health. In my case, it’s why I won’t have a PSA done because a positive result would have no bearing on the clinical decision-making process. It is true that we need… desperately… a good, sensitive (low false negative rate) and specific (low false positive rate) test for breast cancer, one that would catch it early and allow for early treatment. This is where research would pay off the most handsomely, and a lot is being done on genetic markers that holds a lot of promise. Fingers crossed (and I’ll keep on working)!

  14. I agree with Hassenpfeffer. I’m glad I did self-breast exams. That’s how I found my lump, which was DCIS.

    And I’m glad I had a positive attitude. That positive attitude helped, too, because plenty of times I wanted to give up during chemo, but I didn’t because of my positive attitude and because of my loving friends and family.

    No, BSE or a positive attitude do not in themselves cure cancer, but they helped me survive.

    Should we just do nothing and hope for the best? No thank you. I’d rather do something even if the odds are against me.

    Much of your article is on the money, but those two points, you miss the mark.

  15. Bourgeois Nerd and Svenskgudinna: Breast cancer sucks. I don’t think we should sit back and do nothing about it.

    But the infuriating, heart-breaking truth is that right now there’s not much that we can do to protect ourselves from breast cancer. I urge anyone who is interested in this issue to check out the Breast Cancer Deadline project.

  16. Katie: I highlighted that Cincinnati Enquirer story because of the misleading headline. But also because it contains this flat-out lie, “…the 15 minutes it takes to get a mammogram is – still – the most powerful thing a woman can do to protect herself against breast cancer.”

    A mammogram cannot protect you against breast cancer. It is not prevention. It is detection. If a mammogram finds a breast cancer you haven’t been protected from breast cancer—you have it!

    Mammograms do save some lives. I don’t dispute that. But the effect is small and many more women are harmed than helped. The decision to have or not have a mammogram is not a life-or-death decision, it’s a close call that each individual woman should make for herself. As I wrote in my piece, women who want mammograms should have access, but also information.

  17. Hassenpfeffer: you say “I disagree with this statement: ‘Breast self-exams do not reduce breast cancer deaths, no matter how well you do them.’” You can disagree, but this is not an opinion, it’s rigorous scientific evidence.

    Multiple large scale clinical trials have produced unequivocal results: BSE does not reduce cancer deaths. Women who do BSEs have higher rates of biopsy and other tests and they get more and more aggressive treatment, but none of this decreases their risk of dying from breast cancer.

    This article from 2002 explains two of the studies: (A word of caution though—some of the advice in it is outdated. The USPSTF now recommends against BSEs and the American Cancer Society does not promote them any more either.)

    While backpacking in the Swiss alps a few years back, I was desperate to find an edelweiss. So I scrutinized every white flower I saw. Each of them looked a little bit like an edelweiss, and several times I convinced myself I’d found one, until I called my Swiss companion over and he’d say, nope, that’s not it. Finally, on the third or fourth day, I found a real edelweiss, and there was no mistaking it. I would have noticed it even if I hadn’t been so vigilant.

    Admittedly, identifying breast cancer is more complicated than identifying flowers, but the data show that the concept of “look hard enough and you’ll see, whether it’s there or not” holds true for BSEs too.

    When there’s a lump to find, patients usually discover it when they’re rolling over in bed, or taking a shower or getting dressed. Or their lover discovers it. The point is not that women shouldn’t touch their breasts, but rather, that it’s not necessary for them to compulsively inspect their breasts for lumps.

    BSEs probably did some good—they taught women that’s it’s ok to touch their breasts and be familiar with their bodies, but women should know that doing them will not reduce their risk of dying from breast cancer.

    Hypervigilance does not save lives, and I worry that this vigilance puts women at war with their bodies.

  18. Thank you, Christie; I really appreciate your response. I understand now. It’s not that women shouldn’t have “spontaneously” discovered lumps checked, but they shouldn’t go compulsively looking for them, is that more or less the case?

    I realize it’s probably not your area of expertise, but do you think the same findings apply to testicular self-exams for men? Given that testicular cancer generally strikes younger men; that testicles aren’t typically “handled” by sexual partners the same way women’s breasts are (ouch!); and that younger men generally tend to avoid medical visits, I’m suspecting that TSE is still warranted, but I don’t know.

    I just now saw today’s news RE: PSA screening, and my initial question is whether men should continue to have manual screenings performed by physicians, who are trained to differentiate “real” lumps vs. false positives. But does that lead down the same rabbithole of overtreatment that PSA screenings do? There’s also a cultural/gender bias in play, at least in the US: Women have been indoctrinated to have yearly GYN appointments/checkups, whereas the “rubber glove” exam has apparently fallen out of common use (I’m 42 and my GP has never offered or suggested a prostate exam), and because of the unpleasantness of the procedure I believe that physicians tend not to offer it and men tend not to request it.

    I’m not trying to threadjack this article into all cancers from breast cancer, just trying to filter out the wheat from the chaff when it comes to our current screening practices.

  19. @Hass: Prostate cancer is a different beast. Although the PSA test has the same issue with false positives and false negatives that mammograms do, even if prostate cancer is found in most cases it grows very slowly. Even without treatment something else will cause death in the patient before the cancer does (which is hardly ever the case for breast cancer). The treatment also tends to cause severe problems, like urinary incontinence and sexual dysfunction, so in a lot of cases (not all) it’s probably a better clinical decision to treat conservatively or not at all. Still most docs will do a digital rectal exam at 50, so you’re probably not due quite yet. In terms of TSE’s I really don’t have data on that, and a quick search through the literature didn’t turn up much more. It’s a far rarer cancer than prostate or breast cancer and generally occurs in clusters in families. The USPSTF currently recommends against screening in asymptomatic men.

  20. “A woman does not get cancer because she did something wrong or wasn’t vigilant enough about screening. Nor does a woman survive breast cancer because she’s a “fighter” or has a positive attitude. If she survives it, it’s because she was fortunate enough in her misfortune to get a type that responded to treatment.”

    Nailed it. In the metastatic breast cancer community, we know the real truth. Too bad, the truth continues to evade (or be ignored) by so many others, including the world’s largest breast cancer organization who continue to perpetuate the myths of screening based on emotion rather than evidence. What a sad, sad, state of affairs.

  21. A Thank-You-very-Much message from the Netherlands for this great text. Got Breast Cancer at the age of 36. I love it that you tell the truth and no fairy tales. In the mind of people, breast cancer nowadays is a glamorous disease that you survive when you are positive.

    Nothing wrong with being positive, if you are born that way, but if you are born as a pessimist, it is not cancer that will turn you into a optimist…..

  22. And to add something to the discussion…. My breastcancer was missed. Nothing was seen on mammogram and by echo. Glandular tissu is what the radiologist said. I worked as a pharmaceutical sales rep in oncology so I was rather well informed…. It didn’t help. I was relieved by the good news and never thought about it again, until one year later.

    Again mammogram and echo and again nothing was seen. Then an MRI was done and my life suddenly became a bad movie and I seemed to be the star player.

    The MRI showed a tumor of 2,4 to 2,8 to 3,9 inch, positive lymph nodes….. My daughter was only 2,5 years old….. I had a bad prognosis, but march 2012 it will be 5 years. I have no metastasis, as far as I know and I am not dead, that I know for sure.

    It is great news, but regaining normal life and excepting the handicaps of treatments was very tough, very, very tough…. I got a Pink Ribbon Allergy too….

    Mammograms do not detect breast cancer in a lot of cases of young women with dense breast tissu and….. being falsely reassured by a mammogram is more dangerous that having no mammogram (and being maybe more attentive to changes in the breast).

  23. I really don’t have a comment…at least not an eduacted one. But what I do have is a 42 year old wife who received her first Mammogram a week ago and by Teusday of this week her biopsy seems to confirm cancer in her left breast and at least one lymphnode. Now begins the PET/MRI, Genetic testing etc.

    We never thought this would land at our doorstep. But now that it has we must remain positive not only for our own sanity but also for our children. In the hope that “If she survives it, it’s because she was fortunate enough in her misfortune to get a type that responded to treatment.”

    Thank you for the article and all the other comments. But we, the uninformed, must trust in a system created by who we hope are the informed until otherwise educated.

  24. Thank you, Christie, for writing this piece (as well as the other articles you’ve written in the past) to set the record straight on the science that is so often ignored or misreported. This excellent article really brings it home: wishful thinking cannot stand in the place of what we know scientifically, and I agree that “it’s the job of journalists to challenge these false messages.” Why aren’t more journalists doing this??? I’m glad you are.

    -Gayle Sulik

  25. Thank you for articulating all of these really complex issues so well. Your article really encourages everyone to think and that is the first step in deciding how to become a part of the solution. Mammography and BSE were oversold to the General public for so long, it will take many discussions like this one to truly inform women everywhere. Meanwhile, changing the conversation is essential. How do we end this disease? http://www.breastcancerdeadline2020.0rg.

  26. I think you’re wrong. I think you misunderstand the nature of statistics, particularly with respect to the 90 percent reduction of breast cancer occurrence with bilateral mastectomy. I happen to be both a BRCA survivor and an MD cancer researcher. In fact, I research the MOST aggressive form of breast cancer. That 90 survival rate includes both people with metastases and people without: if I had to bet my life of something, a procedure that reduces risk by 90% would be among the first I bet my life on. DCIS with mastectomy, without micromets or mets of any kind, DOES in fact give Wanda Sykes no chance of gettting breast cancer again. While I applaud your skepticism about curative measures, it should be tempered with facts: in that instance ONLY, you are incorrect.

  27. Michael’s Mom: I agree that a 90% reduction=good odds. But 90% reduction is not the same as zero risk.

    That 90 percent stat is from the National Cancer Institute (link below), and it actually refers to bilateral prophylactic mastectomy in women WITHOUT breast cancer.

    “Magnitude of Effect: Risk is reduced as much as 90%, but published study designs may have produced an overestimate.”

  28. Thanks for this article.
    I’m 55 and have been getting yearly mammograms since age 40. My mother and one of her sisters are both BC survivors. Prior to getting BC, my mother had some pre-cancerous cysts removed, right before I turned 40. I have had 2 biopsies but am OK so far= For those of us with family histories, what are we to do? How do you balance the scientific evidence available and all those intangible factors?

    Re: positive attitude. Every time I see one of those TV ads from the Cancer Treatment Centers of America, I get really irritated. Talk about misleading people!

  29. I think you are misinformed and really should not write anything about anything. You are no scientist, nor do you know what can affect a person during their time with this disease. Who are you to say positive attitude does not affect healing? Truly I believe you are a foolish person.

  30. The simple truth is: you can’t die of BRCA without breast tissue. Most women who get prophylactic mastectomies have one or another BRCA gene mutations. Sometimes those people have occult lesions that have micrometastasized; in which case, very small amounts of cancerous breast tissue have escaped already and hidden, often in bone, before the mastectomies. While it is true that the difference between these people and people who have not had any kind of mets cannot be distinguished yet, we shouldn’t assume that there is no difference between no cancer cells and undetectable cancer cells.

  31. I really appreciate this informative article. You really have pointed at the many pitfalls prevalent in our Breast Cancer Culture.

    I really believe that Breast Themographies should be deployed universally to help detect changes in vascular tissue. Long before a Mammo will detect a cancerous tumor, a Thermograghy can encourage remediation to reduce vascular activity.

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