Respectful Insolence

ResearchBlogging.orgLast week blew by me in a blur. Because I was in full grant writing frenzy to get an R01 in the can by Friday, pretty much anything that wasn’t totally urgent got shoved aside, at least after Wednesday. Of course, it was last Wednesday that yet another mammography study was being touted as a “landmark” study. I had just enough time to look it over briefly and decide that I really should blog about it, particularly given that it came hot on the heels of a Norwegian study less than a week before that found the benefits of mammography to be less than previously believed and even more particularly because this study apparently showed that mammography was much more beneficial to women between the ages of 40-49 than previously thought. Given the kerfuffle over the USPSTF update of its guidelines for mammography last fall, where the USPSTF recommended starting regular mammography at the age of 50 rather than 40 and ran into a buzzsaw of criticism, both honest, dishonest, and from those who were protecting their turf. Naturally, with that background, the question is: Does this study help to clarify the question of assessing the benefits versus the risks of screening mammography? Or does it complicate things even more?

Perhaps a little of both.

As I’ve written about over the last couple of years, evidence has been accumulating that is muddying the picture regarding the benefits of screening mammography, So, before I move on to the study, let’s be absolutely clear on what it is that we are discussing here. Screening mammography is different from diagnostic mammography in that it is performed at regular intervals in asymptomatic women in order to detect cancer at an earlier stage and thereby allow earlier intervention, resulting in the saving of more lives than if we waited until breast cancer produces symptoms (such as a lump) that lead to diagnosis. If a woman feels a lump or some change in her breast and undergoes mammography, that is not screening. In that case, mammography is being done for diagnostic purposes. We are not discussing diagnostic mammography. We are discussing screening mammography. I can’t emphasize that distinction enough.

The study that was reported last week was performed in Sweden and reported under such headlines as New mammogram study stirs debate for women in 40s; Mammogram Benefit Seen for Women in Their 40s; and Swedish mammography study sows more confusion about screening for breast cancer. I found radiologists I know circulating the study as though it were vindication, and Dr. Len of the American Cancer Society touted it as being very important, while Dr. Daniel B. Kopans (whom we’ve met before crudely and blatantly defending his turf over the USPSTF guidelines) declared that the study “should end any debate and end the use of age 50 as a threshold for screening.”

Not so fast there, pardner.

None of this is to say that mammographic screening is not potentially beneficial to women in their 40s. I also happen to have come to the conclusion based on more recent studies that that benefit is not as great as previously believed. Certainly, the potential benefit is much smaller than it is for women over 50. In fact, the introduction of the article, published by Hellquist et al and entitled Effectiveness of population-based service screening with mammography for women ages 40 to 49 years: Evaluation of the Swedish Mammography Screening in Young Women (SCRY) cohort:

Consensus has been reached that mammography screening is efficient for women ages 50 to 69 years; however, the effectiveness of such screening for women ages 40 to 49 years still is questioned. Randomized controlled trials (RCTs) have revealed a significant effect for women aged 40 years. Recommendations to invite women from age 40 years to screening based on these RCTs later were contested when meta-analyses and overviews that focused on women ages 40 to 49 years revealed no statistically significant effect (throughout this report, results are considered statistically significant at the 5% level). However, both the Gothenburg trial and the Malmö trial reported significant mortality reductions among women aged <50 years at randomization. A few studies have focused on screening for the group ages 40 to 49. years. The Canadian National Breast Screening Study randomized women ages 40 to 49 years and invited them to 4 or 5 annual screens, but that study demonstrated no significant effect on breast cancer mortality. In the Age trial, which is the only RCT that was designed to study this age group, women were randomized at ages 39 to 41 years, and the results indicated a statistically nonsignificant 17% reduction in mortality. Few studies have investigated the effectiveness of service screening for the group ages 40 to 49 years. A study comparing breast cancer mortality in Swedish counties in which women ages 40 to 49 years were invited to screening versus breast cancer mortality among women in counties in which the same age group was not invited to screening indicated a statistically nonsignificant 14% reduction in mortality for the women who were invited to screening and were followed for 10 years. A study in northern Sweden indicated a statistically significant 36% reduction in mortality for this age group.

See what I mean? Clear as mud. The situation regarding whether regular mammographic screening for women 40-49 years of age is controversial, and the data are conflicting. Unfortunately, I don’t think this study will change that one way or the other, in favor of regular mammographic screening in this age group or against it. My personal interpretation of the situation is that there is a benefit to beginning screening at age 40, but that it is not nearly as compelling as beginning it at age 50, and there is the potential for harm through overdiagnosis and overtreatment. Remember again that I am referring to the screening of asymptomatic women who are at an average risk for breast cancer. This analysis does not apply for women with symptoms or who are at a high risk of breast cancer. I know I keep harping on that, but it’s important.

Back to the Swedish study. What the investigators was similar to what the investigators who published th Norwegian study did in that they took advantage of a quirk in how mammographic screening was rolled out in their country a couple of decades ago. In the case of the Norwegian study, some counties offered mammography before others did. The Norwegian investigators compared improvements in breast cancer survival in counties that introduced mammographic screening early with those in counties that introduced it later in order to produce an estimate of how much of the improvement in breast cancer survival was due to screening mammography and how much was due to other factors, part of which is likely to be better treatments. In this study, Swedish investigators took advantage of how different counties invited women for screening mammography after 1988. Basically, the national government had recommended inviting women above age 40 for screening mammography in 1986, it backtracked. Because of a lack of resources, the government recommended that the counties concentrate on women aged 50 and above. As a result, about half the counties continued to recommend mammography for women over 40 and the other half only invited women over 50 years old.

The primary objective of the study was to compare breast cancer mortality between the counties that did and did not invite women ages 40-49 for screening. Investigators chose as the study group women from areas where women aged 40-49 underwent screening mammography for at least 6 years between 1986 and 2005. The control group included women from areas where screening didn’t begin until age 50. These two groups represent the Mammography Screening of Young Women (SCRY) cohort, and in 1990 there were 620,620 women in this cohort. The investigators then compared the risk of dying of breast cancer between women in the control group and the experimental group. The results reported were that women who were invited for screening beginning at age 40 had a 26% lower risk of dying of breast cancer than women who did not undergo regular screening between ages 40-49, and women who actually underwent regular screening had a 29% lower risk of dying of breast cancer. The estimated number needed to screen (NNS) during a ten year period was 1,252, which means that 1,252 women would have to be screened to save one life from breast cancer. This is within the range of estimates for mammographic screening of women over 50.

Unfortunately, there are a lot of problems with this study. These go beyond the usual problems with epidemiological studies looking at retrospective, population-based data that can bias a study one way or the other. If you think about it, I bet you can pick one of these problems out right away. Think about it. This was not randomized data. Some counties chose to start screening women at age 40, and some did not. Why might that be? Governments don’t make such choices randomly. Perhaps the county governments that did choose to begin screening at age 40 were better off than the counties that did not. Perhaps there were other differences between the two sets of counties that might account for a decreased death rate from breast cancer. Breast cancer treatment improved enormously between 1986 and 2006. It’s quite reasonable to speculate that counties that were willing to invest in mammographic screening at a younger age might also have been willing to invest more in other areas of health care related to breast cancer. Another problem is the fact that various counties changed their screening strategy to begin either at 40 or at 50. One even decided to split the difference and start at age 45. These required various statistical adjustments. Whether these were done correctly or in a fashion that would tend to introduce bias is impossible to tell from the manuscript.

Finally, do you remember the term lead time bias? As I explained so long ago, lead time bias is a phenomenon that leads to the appearance that cancer survival is longer, even though it is not. The phenomenon exists because for an individual patient cancer survival is defined as the time from diagnosis to the time to death. If a cancer is diagnosed earlier, survival will appear to be longer even if treatment has no effect. I’ll reuse a diagram that I’ve used to teach the concept of lead time bias in order to help:

As I explained before, unless the rate of progression from the point of a screen-detected abnormality to a clinically detected abnormality is known, it is very difficult to figure out whether a treatment of a screen-detected tumor is actually improving survival when compared to tumors detected later. For a genuine benefit in terms of survival to be shown, the lead time needs to be known and subtracted from the group with the test-based diagnoses. The problem is that the use of the more sensitive detection tests usually precede such knowledge of the true lead time by several years. The adjustment for lead time assumes that the screening test-detected tumors will progress at the same rate as those detected later clinically.

The authors of this study concentrated on cancers detected when women were in their 40s, whether they died in their 40s or many years later of their tumors. This is appropriate given that the entire hypothesis behind screening is that early detection will result in better outcomes. However, there is a problem comparing these women to women who began screening in their 50s. In this latter group of women, it’s unknown which of them would have been diagnosed earlier if the woman had been screened in her 40s, how fast they would have progressed, and whether treatment would have had an effect. There’s no way to know which of these women should be counted and which should not. So the authors made another statistical adjustment whose rationale, truth be told, I can’t for the life of me figure out:

The person-years that were added or subtracted corresponded to the number in the continuous age interval (50 LT, 50) and in the time interval (S, S þ LT), respectively, where LT is the estimated lead time, and S the start point. However, only the lead time for women who actually died from breast cancer can cause a bias. Therefore, the lead time was estimated for this group. The lead time for women ages 40 to 49 years who died from breast cancer reportedly was much shorter than the usual lead time for all women who are targeted or who have disease detected in a screening program. In the current study, the lead time for women who died of breast cancer, which we estimated as the difference in the mean time from diagnosis to breast cancer death between the study group and the control group, was approximately 1 month. An alternative estimate based on 49 women from the RCT WE4 was approximately 1 year.

I have a hard time thinking that these guys just made it up as they went along. Lead time in breast cancer is generally much longer than one month. It’s usually at least several months and may be as long as several years. One year is not entirely unreasonable, but it’s at the low end of most estimates of lead time. Other studies use estimates of three or four years.

Deciding what diseases to screen for, what screening tests to use, what age at which to begin screening, and over what intervals are all incredibly complex questions, particularly in cancer. Although it “makes sense” that earlier detection should save lives, such is not always the case but it is some of the time. The problem is that we can’t differentiate between the cases where early detection will save lives and when it won’t. We don’t always know what the lead time bias is, nor can we identify the subset of patients whose screen-diagnosed cancers would never progress to endanger their lives. Moreover, screening always has the potential to cause harm through overdiagnosis and overtreatment, anbd that har is not always as minor as having to undergo biopsies that, in retrospect, were unnecessary. Sometimes that overdiagnosis leads to overtreatment that includes surgery, chemotherapy, and radiation. This study did not even consider false positives or other adverse outcomes.

In the end, whether to screen or not is a decision that involves scientific, cultural, and economic considerations. There is no doubt that screening mammography saves lives. What we are undergoing is a recalibration of our understanding of just how beneficial it is and at what cost. There’s little doubt that the benefits outweigh the risks for women over 50. What we are still not sure of is whether the same is true for women between 40 and 49, which is why screening between these ages still remains somewhat controversial.

The Swedish study doesn’t change that.

REFERENCE:

Hellquist, B., Duffy, S., Abdsaleh, S., Björneld, L., Bordás, P., Tabár, L., Viták, B., Zackrisson, S., Nyström, L., & Jonsson, H. (2010). Effectiveness of population-based service screening with mammography for women ages 40 to 49 years Cancer DOI: 10.1002/cncr.25650

Comments

  1. #1 Jim
    October 7, 2010

    All I can offer is personal experience. My mom started screening in her 40′s. Had screening procedures had been different and not done until age 50, she probably wouldn’t be here now. It’s a tax I’m willing to pay.

  2. #2 Vasha
    October 7, 2010

    It’s a tax I’m willing to pay.

    But Jim, you are not a woman between 40 and 49, you are not at risk of being treated unnecessarily, how is that a tax “you” are paying?

  3. #3 Vicki
    October 7, 2010

    Jim,

    It’s reassuring that people—or at least one person—are willing to pay the expense in dollars for the screening equipment and staff. But when I consider whether to be screened, I’m not just concerned about the copay for the mammogram. (Given my income and health insurance, it’s not a significant factor.) I’m considering questions that include the time it takes, the pain of the test, the effects of radiation, and the possible effects of an ambiguous result or a false positive. Best case, ambiguous means stress, a follow-up sonogram (painless, but more time taken), and another mammogram in six months.

    Yes, there are worse things than biopsies, but that statement is not equivalent to “sure, give me a biopsy, I’m not doing anything else Thursday afternoon,” even for a woman who can easily take the time for the testing.

    When you say you’re “willing to pay the tax,” would you lobby for legislation giving women government-paid time off for mammograms and follow-up tests, as well as guarantees that they have to be given that time even if their employer finds it inconvenient? (My employer has to let me take time for jury service, but they don’t have to pay my salary, and the state of New York gives jurors a munificent $40/day, which is below minimum wage if they keep you all day.)

  4. #4 Gr8blessings
    October 7, 2010

    I just had my first screening mammography this week. I’m 40. The total cost was paid by my health coverage. It took 40 minutes including the travel time to & from my office to the clinic, filling out a survey and providing feedback. I found the procedure was a bit uncomfortable but not painful. I’ve just finished breastfeeding so I’m used to being fully exposed and manhandled, so the manipulation of the breast to get the optimal position for the x-ray didn’t bother me, but I could see other women being bothered by that. The tech took 4 X-rays and I’m not too concerned about radiation exposure; seemed about the same as having x-rays at the dentist. I haven’t got the results back yet, but I’d much rather see a false positive than a false negative.

    I took my doctor’s recommendation to get this procedure because I’d like to have images of normal in case I do have suspicions of abnormal down the road. I would also want to know sooner rather than later because it makes sense to me that earlier treatment will be more effective. My decision was heavily influenced by the recommendation of my doctor and fear of dying from cancer. I want to do everything I can to be around as long as possible for my daughters. I haven’t researched the science behind the recommendation, so I found this post very interesting. I’m looking forward to reading more about this topic since I’m now part of the controversial age group.

  5. #5 Brian Utterback
    October 7, 2010

    “she probably wouldn’t be here now”

    How do you know? I have heard this argument from “personal experience” many times now. There is no way to know in any individual case what the outcome would have been without screening, since there is no way to know if the cancer would have been asymptomatic until it was untreatable. Sometimes the response is that the doctor said that it was a good thing that they found it when they did, but doctors say that all the time, and they generally can’t know either. The only way to make this decision is with real data.

    On the other hand, I have wondered whether we look at the right thresholds. Perhaps mortality is not the only statistic we should look at.

  6. #6 BKsea
    October 7, 2010

    Vasha and Vicki (#2 and #3): I think you are being a little unfair to Jim. He’s not saying that women should be forced to undergo screening, etc. I think his point is just that in his mind, experience and the statistics say that the financial costs are worth it to anyone who wants to undergo screening. That is, coverage of screening mamography should not be denied by health plans on the basis of cost. I don’t think you need to have breasts to make this argument. Of course those who do have breasts will have to make their own decisions on whether screening and the potential negative consequences are justified.

  7. #7 Vasha
    October 7, 2010

    The main issue being discussed is not coverage, but whether screening should be routinely recommended for women in their forties without risk factors. I do think that insurance should cover mammograms whatever the reason for getting them, and however low-risk the person getting them — it’s a decision that should be discussed with a doctor who mentions possible downsides as well as benefits, but covered by insurance whatever the decision. But there’s a lot of resistance to stopping the publicity campaigns aimed at screening all women in their forties; I read Jim’s comment as saying that this screening saved his mother’s life (he thinks) and therefore it should be done no matter how much trouble it causes for how many women.

  8. #8 Denice Walter
    October 7, 2010

    Being a connoisseur of woo-enabling websites, I searched several of the worst I know** for articles about mammography: appallingly, the general trend was either the usual fear-mongering about the inherent dangers of the procedure or dismissal of the procedure as ineffectual. A few articles reassured women that a diet high in vitamin D would eliminate the development of breast cancer; several others lauded thermography as a “safer” substitute for mammography. The psychological reasons that people fear or avoid medical tests are too numerous (and self-evident) to mention, it appears that woo merchants build on this reality in the service of self- or product- merchandising. Truely sick-making.** ( NaturalNews; Gary Null.com; Mercola.com )

  9. #9 GC
    October 7, 2010

    The main problem I see with this Norwegian study is that it was carried mostly in an homogeneous population (i.e mostly white people). While in the US we have a diversity of races.

  10. #10 Scott
    October 7, 2010

    I do think that insurance should cover mammograms whatever the reason for getting them, and however low-risk the person getting them — it’s a decision that should be discussed with a doctor who mentions possible downsides as well as benefits, but covered by insurance whatever the decision.

    This, unfortunately, is the sort of thinking that sends health care costs out of control. We HAVE to be willing to say, “No. This costs too much money for the benefits, so if you want it you have to pay out of your own pocket for it.”

  11. #11 Scott
    October 7, 2010

    BTW, Vasha:

    My reading of your comment indicates to me that the quoted bit was not meant to be restricted to the 40+ range. IOW, that your meaning was that insurance should pay for a mammogram for a 25-year-old with no family history or other risk factors, so long as she wants it. If my understanding is incorrect, my prior comment may be off-base.

    Just trying to avoid potential misunderstandings.

  12. #12 Prometheus
    October 7, 2010

    I think what this study shows is one of the dangers of universal screening for disease. It’s a mathematically simple exercise.

    I don’t pretend to know the numbers for breast cancer, so let’s try a more hypothetical example:

    Let’s assume that we have a test for a disease, terminal moraine, for example, that has a false positive (says “disease” in the absence of disease) rate of 5% (which I think is better than screening mammograms) and a false negative (says “no disease” in the presence of disease) rate of 10% (about equal to that of screening mammography) for a disease that affects 5 out of 10,000 people (about the rate of breast cancer in women under 50, according to the ACS).

    So, if we screen one million people for terminal moraine, here are the numbers:

    actually have terminal moraine = 500

    true positive screening test = 450
    true negative screening test = 949,525

    false positive screening test = 49,975
    false negative screening test = 50

    Thus, our universal screening for terminal moraine will result in 50,425 people who are told they might have the disease and will need further testing. Of these, only 0.9% of them will actually have the disease. The remaining 99.1% will have to undergo more extensive – possibly invasive – testing to determine that they are, in fact, disease-free.

    Additionally, 50 people will be told that they are disease-free when, in fact, they have early terminal moraine.

    Leaving aside for now the emotional toll on the 99.1% of people with false positive tests for terminal moraine, we need to consider the monetary costs of these people needing more extensive testing to rule out terminal moraine as well as the morbidity and mortality of those tests (e.g. biopsy, CT, core sampling). The costs of screening have to take into account all of the consequences, not just the 450 people whose terminal moraine is detected in the pre-clinical stage.

    Now, what if we knew that people of a certain demographic group with a history of certain disorders related to terminal moraine and more than one first-degree relative who had terminal moraine were at four times the risk of the general population? If these people make up only 20% of the population, then we only have to screen 200,000 higher risk people and our numbers come out this way:

    actually have terminal moraine = 500 (out of the 1 million)
    actually have terminal moraine = 400 (out of those screened)

    true positive screening test = 360
    true negative screening test = 189,620

    false positive screening test = 9,980
    false negative screening test = 40

    people with terminal moraine not screened = 100
    total people with undetected terminal moraine = 140

    Now, only 96.5% of those who test positive are actually disease-free. But, because the screening was selective only 9,980 people will have to undergo additional testing (and anxiety) to find out they are actually disease-free, instead of the previous false-positive number of 49,975. This is a reduction in over 80% from the “universal screening” numbers.

    Of course, this is all just a hypothetical example with a made-up disease, but the same process can be applied to universal screening mammograms.

    Prometheus

  13. #13 Elaine Schattner, M.D.
    October 7, 2010

    Thanks for this post, and for such a clear explanation of lead-time bias. The results of this (Swedish) study, which extended over many years, cannot be accounted for by that effect.

  14. #14 HealthEd
    October 7, 2010

    Just to go off on a slight tangent … I’m not terribly statistics-savvy (regret now the “but I’m a humanities major!” attitude). But I wonder if this latest study or earlier ones focuses not only on mortality, but also on morbidity. That is, even if there isn’t a statistically significant difference in death rates, is there a significant difference in things like mastectomy rates? In other words, might earlier screening, even if it doesn’t save enough lives to constitute a real benefit, perhaps prevent a sizable amount of women from losing their boobs? Like I said, I’m fairly clueless about this stuff. Please educate me, people!

  15. #15 Prometheus
    October 7, 2010

    I left off a sentence from the next-to-last paragraph:

    “The trade-off is that now 28% of pre-clinical terminal moraine is undetected (false-negative plus disease in people not screened) instead of the 10% missed with universal screening. Out of one million people, 90 more people will have undetected terminal moraine with selective screening.”

    Sorry about that – faulty cut-and-paste on my part.

    Prometheus

  16. #16 Vicki
    October 7, 2010

    BKSea: My thought isn’t that Jim doesn’t get a vote because he isn’t going to be getting screened for mammograms. My thought is that if someone thinks it’s worthwhile for society to pay for this, they should be aware of the total expense.

    Free screening mammograms aren’t enough, because many of the same women who don’t have insurance, or can’t afford a copay for a mammogram, can’t get the time away from work, or can’t afford to take that time off because they won’t get paid. And if someone is having trouble affording a mammogram, she may figure there’s no point bothering, because she can’t afford the biopsy if the test finds something. Maybe if she waits a year or two, she’ll have a better job, with better health coverage, which will pay for that biopsy, and maybe the better job will let her take time off during office hours without losing a day’s pay.

    In the context of Orac’s post, “it’s a tax I’m willing to pay” from someone who will not be making the decision about his own body seemed dismissive. All we have here is words, and I’d be unsurprised to know that Jim didn’t think about the rest because his mother and other female relatives weren’t/aren’t in a position to have to make those hard decisions.

  17. #17 sikiş
    October 7, 2010

    Being a connoisseur of woo-enabling websites, I searched several of the worst I know** for articles about mammography: appallingly, the general trend was either the usual fear-mongering about the inherent dangers of the procedure or dismissal of the procedure as ineffectual. A few articles reassured women that a diet high in vitamin D would eliminate the development of breast cancer; several others lauded thermography as a “safer” substitute for mammography. The psychological reasons that people fear or avoid medical tests are too sikiş izle numerous (and self-evident) to mention, it appears that woo merchants build on this reality in the service of self- or product- merchandising. Truely sick-making.** ( NaturalNews; Gary Null.com; Mercola.com )

  18. #18 Todd W.
    October 7, 2010

    Ahh, sikis the copy-paste spambot strikes again.

  19. #19 James Sweet
    October 7, 2010

    Jim, one problem is, there very well could be another “Jim” out there whose mother got diagnosed with breast cancer in her 40s due to a mammographic screening program, had an operation, and died of the complications of the operation — and whose tumor, if left alone, would never have progressed to the point of being fatal.

    This is in addition to all of the other cost/benefit stuff people have pointed out.

  20. #20 antipodean
    October 7, 2010

    That’s a very nice post, Orac. I love it when you write about your field. Thanks again.

  21. #21 khan
    October 7, 2010

    I was semi forced to get a mammogram when I was 42. I’m now 60.

    Do I really need another one?

  22. #22 Orac
    October 7, 2010

    Yes. You’re in the age range where mammography does the most good.

  23. #23 Djinna
    October 7, 2010

    Pardon the length of this comment, but they just told me yesterday that my lump really needs to come out soon, so the emotions are very fresh.

    I had a lump discovered on a mammo at 29 – I’d had a lot of cysts, and had been having bad fibrocystic pain, so they wanted to start early on me. Couple weeks of terrible worrying before I could get the biopsy scheduled and the results back. Just a fibroadenoma, but I’ve been stuck with having to get follow-up ultrasounds pretty much every six months ever since, and a repeat biopsy last year, since it had grown so much over the years. Great insurance, don’t have to pay copays for the procedures at the Breast Center, just for the doctor visits. And it is a pain in the butt, having to schedule these twice a year for something that is super unlikely to ever cause me real problems. That’s why I’m actually kinda glad that it’s grown big enough that they’re telling me I really should get it removed, even though it doesn’t bother me, because the incessant follow-up stuff does. Granted, in the last two years, it’s gotten so big that there’s no way I wouldn’t fall into the “diagnostic” category as opposed to the “screening” category, even though I’m still under 40 and (non-skin) cancer of any type is completely unheard of in my family. (Why do they ask about family cancer history in general, if cancer is not a single disease? I don’t get that part.)

    I hate to say that my having to go in to see specialists at least once a year, and ultrasounds twice a year, and biopsies every couple years, is at all comparable to the possibility of saving someone’s life. That’s the problem, it sounds selfish to think that having to go through the inconvenience of follow-up care is even remotely comparable to someone not knowing in time to do something about the real deal. But if the numbers really do show that there are that many thousands of women going through the added worry and inconvenience and cost and pain (mammograms and biopsies are not fun, ultrasounds are painless, but taking half a day off work isn’t) for one to be detected earlier than it would have been, it stops feeling like quite such a trivial complaint.

    The fact that I’m actually relieved that they now want me to undergo surgical removal, with all the pain and risk and recovery involved tells me a lot about how much I really hate knowing about this thing, even though I also know that it’s not anything worth worrying about. I was very surprised to discover that relief was my first and strongest emotion to learning that it’s reached the point where they want to remove it. I’m sure there will be some more repeat testing until they’re sure it’s gone, but I am very much looking forward to not having to get so many damn tests so many times a year for another decade or so.

    A woman who doesn’t have a job with flexible sick time and insurance that pays for all this without question, who is stuck in the hellish phase of knowing that there’s something there, from a free screening mammogram, who can’t get a biopsy done quickly, if at all? That’s non-trivial human suffering. Lives are important and worth doing what we can to save them, but there’s something to be said for preserving mental health and avoiding pain. I’m lucky that the financial cost doesn’t affect me much, but the mental anguish does. Financial tax, sure, no big deal compared to possibly saving someone’s life. Physical and mental tax? Quality of life isn’t necessarily inconsequential compared to quantity of life.

  24. #24 Wehaf
    October 8, 2010

    HealthEd – actually, morbidity is also expected to increase. Early screening detects cancers that never would progress to be dangerous, along with cancers that would. And right now we can’t tell the difference. So we have to treat them all. That means surgery, chemo, and/or radiation for a cohort of women who don’t need any of those treatments.

    This is another point Jim should note. The “tax” is not just that women have to take a few hours off from work to get a mammogram, the “tax” is that some women will undergo unnecessary chemotherapy, radiation, and surgery treatments, with all their attendant (extremely unpleasant and dangerous) side effects.

  25. #25 T. Bruce McNeely
    October 8, 2010

    Wehaf:

    I believe that the breast cancers that may not progress are low-grade localized in-situ cancers. These are treated with local excision (lumpectomy with clear excision margins). Chemotherapy and radiation are not used, nor is axillary lymph node dissection. Local excision is still surgery, with its own side effects, but not in the same league as the treatments for invasive or metastatic disease. I expect that the number of women getting these treatments unnecessarily would be very small.
    Of course, someone with more knowledge of breast cancer therapy (who might that be?) can correct me if I’m wrong.

  26. #26 Wehaf
    October 8, 2010

    T. Bruce McNeely – that makes sense, and you are probably right that it is the common case. But I know that there are doctors who treat in-situ cancers very aggressively, especially in pre-menopausal women. I have a friend who had DCIS (“stage 0″ breast cancer) who underwent a double radical mastectomy on her doctor’s advice. Of course, the plural of anecdote is not data, as we all know. But massive over-treatment does happen.

  27. #27 T. Bruce McNeely
    October 8, 2010

    Wehaf:

    Double mastectomy for DCIS (without lymph node dissection) would be appropriate treatment if it was extensive high-grade DCIS. This carries a high risk of invasion (more than 50%,I believe) and the extensive nature of the disease prevents local excision. Your friend may have been at high risk because of family history or genetic factors.
    If your friend had bilateral radical mastectomy (lymph node dissection and pectoral muscle removal) for DCIS, I agree, that is massive over-treatment.

  28. #28 Carolyn Thomas
    October 8, 2010

    Now that we are awash in full-throttle PINK out there during Breast Cancer Awareness Month, there is much discussion online about screening vs diagnostic mammography (thanks for pointing out the important difference here!) and also how the rush for corporate branding of All Things Pink has somehow not kept up with current research on treatment, much of which differentiates between aggressive treatment of all cancers found through early detection, and aggressive treatment of only those cancers that actually SHOULD be treated.

    I’d recommend Dr. Samantha King’s book: “Pink Ribbon Inc: Breast Cancer and the Politics of Philanthropy” for an eye-opening look at another aspect of this issue.

    For example, Dr. H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice is critical of the sponsorship of Breast Cancer Awareness Month by the drug company, AstraZeneca. He told the Los Angeles Times this month:

    “It’s a common problem with disease awareness campaigns and patient advocacy groups. If you look into their funding sources, you’ll often find a pharmaceutical company or device maker who stands to benefit from an expansion in the number of people with the condition.”

    Dr. Welch calls AstraZeneca’s sponsorship of the awareness month “a huge conflict of interest” – since encouraging women to get screened for breast cancer will invariably increase the number of breast cancer diagnoses and thus the market for their breast cancer drugs Arimidex, Faslodex, Nolvadex and Zoladex. The more we screen, he explains, the more women we subject to “surgery, chemotherapy and radiation for cancers that never would have harmed them”. Dr. Welch cites a paper published last month in the New England Journal of Medicine that estimated for every life saved by a screening mammogram, five to 15 other women needlessly became diagnosed and treated.

    More on this at: “What Heart Patients Can Learn From ‘Pinkwashing’ This Month” at: http://myheartsisters.org/2010/10/05/pinkwashing/

  29. #29 NYBGRUS
    October 8, 2010

    @ Djinna: I am very sorry to hear about the trouble and angst you are going through. I can only imagine how little fun that must be. To answer your question about why the extensive look at family history of all cancers: Cancer is indeed not a single disease. However, it is a disease of genetic mutation. The “multi-hit theory” of cancer states that you must have a specific set of mutations, crossovers, or deletions to get a malignant tumor. However, some of these “hits” are shared by different types of cancer. For example the BRCA gene mutation is predominant in breast cancer but also predisposes for ovarian cancer. A p53 gene deletion is present in 50% of all cancers. We have identified a large number of such genes, and thus having a complete history can clue us in to what gene mutations you may have been saddled with and could indicate strong predisposition to a cancer no one in your family has had. I hope that answers your question – I hate that so many patients leave a consultation (especially many consults like I am sure that you have had) and do not have answers to such important questions. I make it a point to explain as much as I can to every patient I interact with. Best of luck and all good wishes for you in your treatments.

  30. #30 Kathi
    October 9, 2010

    Well, hello again, Orac; & hello, all. Interesting discussion here. As usual, I am more nauseated than I can say, both as a breast cancer survivor & as a health care clinician, by the increasingly ridiculous Pink Hype. Also read & recommend the excellent post cited by Carolyn.

    One of the troubles I always had with the USPSTF guidelines is that they were so poorly written as to be their own worst advertisement. Clear as mud, indeed. Also, would somebody care to define “benefit” & “cost” in this context? Those kinds of terms are subject to numerous interpretations, both concrete and intangible. It’s difficult to interpret any medical findings or assertions about breast or any other cancer without a clear understanding of the starting assumptions.

    Wehaf & T. Bruce, I was diagnosed with DCIS at age 54. Don’t even get me started on how it feels to endure what the oncology community put me through, only to read remarks by Susan Love about how my treatment could well have been entirely unnecessary. In the first place, until we come up with more specific & reliable ways to determine which DCIS cancers are likely to become invasive and when that might occur, physicians ought not to be so cavalier as to remark publicly that thousands of us have gone through hell for nothing. Furthermore, there is an appalling lack of consistency among oncologists & breast surgeons about how to provide patients with the means to make truly informed consent to treatment. I was at best typically presented with one treatment option only & a vague reference to other possibilities, or worse, with a my-way-or-the-highway assessment of what I should do & the strong implication that I would be foolish to disagree. Believe me, I deal with time constraints & productivity pressures myself as a clinician, but even if a doctor does not have time to describe every consideration, he or she ought at least to steer a patient toward getting more thorough information & encouraging her to take the time to do so.

    It would also help to chuck out the offensively euphemistic & misleading term “lumpectomy,” which is now commonly used to describe all partial mastectomies, no matter how extensive. I had no idea going into my ersatz lumpectomy that I was about to lose half of my breast. That is not a “lump” by any stretch. I certainly don’t object to having had the tissue removed. What I object to was not being told beforehand that I could lose so much of it, so that perhaps I could have elected to do something different. Nor was I told about the potential long-term & late-term effects of radiation treatment, which followed surgery & continue to affect me two years after treatment, forcing me to cut back my works hours & activities significantly. Had I been given the opportunity to make a thoroughly informed consent to my treatment plan, I may well have elected to get a full rather than a partial mastectomy so that I could have avoided radiation altogether.

    The screening mammogram I had was the best part of my experience, as it found the DCIS in the first place. But there was no benefit to me at all in being misled & inadequately informed about how to deal with it. As it was, I myself discovered that there were shorter radiation protocols than the 7-week, 30-visit protocol described to me, & I was able to participate in a much shorter one only because I asked about it. As it was, radiation flattened me in ways that were not addressed even while I was getting it. And the real cost to me in terms of lost wages due to long and late-term effects has been concrete and considerable. And all for “early” cancer.

    I’m glad to be alive, but my life (& my bank account, as well as my energy, concentration, range of motion & peace of mind) has not been the same since. The cost of surviving cancer has been incalculable & largely ignored by the physicians who treated it.

  31. #31 Chris
    October 9, 2010

    Kathi:

    The cost of surviving cancer has been incalculable & largely ignored by the physicians who treated it.

    How is it compared to the alternative?

  32. #32 Kathi
    October 9, 2010

    Chris, that’s always the argument. And that comeback misses the point. If a patient has a more thorough idea what she’s in for, she can make better choices & plan ahead. The choices should belong to the patient, not by default to the doctors. For me, the difference between a mastectomy rather than a partial mast & radiation may well have been my being able to continue my job full-time and avoiding over two years of radiation scarring to my lungs, axillary cording & pain, higher risk for lymphedema, fatigue, low blood counts, etc., etc. My prognosis would have been about the same.

  33. #33 Kathi
    October 9, 2010

    Chris, that’s always the argument. And that comeback misses the point of informed consent & of “do no harm.” If a patient has a more thorough idea what she’s in for, she can make better choices & plan ahead. The choices should belong to the patient, not by default to the doctors for not doing the right thing. For me, the difference between a mastectomy rather than a partial mast & radiation may well have been my being able to continue working full-time and avoiding over two years of radiation scarring to my lungs, axillary cording & pain, fatigue, low blood counts, etc., etc. My prognosis would have been about the same either way.

  34. #34 Chris
    October 9, 2010

    Okay. Of course, in most cases of medical treatment there are lots of choices to be made, and many times not all information needed is even available. So your rant just illustrates that it is complicated.

    But I meant not getting any treatment.

  35. #35 Louise
    October 10, 2010

    Interesting post and responses.

    For want of a better way to put it, I’m a breast cancer survivor (so far); I hate all the battle metaphors associated with cancer, including the word ‘survivor’, even more that I hate Pink October and the marketing opportunity that breast cancer becomes.

    But anyway. People don’t seem to like personal stories, and I can understand why. Individuals’ stories of having been saved (perhaps) by early detection of breast cancer due to routine screening aren’t an adequate basis for determining policy on this issue.

    It seems that in countries where screening begins at 50, and is not annual even then (such as the UK), death rates from breast cancer don’t differ significantly from those in the US where annual screening begins at 40.

    But… if I lived in the US the chances are my breast cancer would have been detected in my 40s while it was still at an early stage, rather than when I was 50 by which time it was stage 3 and affecting 13 lymph nodes.

    Nobody would have been able to tell, of course, whether the early stage cancer that might have been detected in my 40s would progress and spread in that way. And actually, the overall result is probably the same – almost 7 years after diagnosis I am alive and reasonably well with no sign of cancer. Difference is – i’d probably still have two breasts, and may not have had to have the full range of aggressive treatment – chemotherapy, radiotherapy and Arimidex.

    It seems to me earlier screening would probably have been cheaper.

  36. #36 Mephistopheles O'Brien
    October 10, 2010

    Louise,
    That’s certainly the complicating factor. For the individual who would eventually have life threatening breast cancer, early detection through mammography is clearly cheaper and safer than detecting it late.