Unpacking the Mammography Guidelines, Or Why As A Young Survivor I Don’t Think They’re All That Bad

As recently as this week the 2009 US Preventative Services Task Force Breast Cancer Screening Guidelines are back in the headlines.

As a cancer survivor with no known family history of breast or related cancers and whose cancer was first detected on a baseline mammogram at the age of 35, issues related to the value of screening and young women are very close to my heart. By all rights, my cancer might not have been found for another five years, and based on the current guidelines, perhaps it would not have even been found yet. So this is something that matters a great deal to me personally.

Before we look at the guidelines, the process by which they were developed, and the controversy that surrounds them, I need to be clear about something. As a breast cancer advocate I often speak about evidence-based decision making. By that I mean that our goal is to put our emotions in perspective. As a survivor, I know how truly difficult that is. And as a survivor, I can choose to allow my emotions to dictate as much of my decision-making as I wish. But a focus on evidence-based decisions helps me know when I am thinking rationally and when I am responding emotionally. There is sometimes a sense that evidence-based decision making is “harsh” and doesn’t account for a person’s fears. I respectfully disagree; it asks each of us to weigh the science in a balanced and fair manner, and then see how our emotional landscape informs a course of action. As such, what I address in this particular piece is the science, and only then how each of us utilizes science in our own lives is up to us.

The gist of the USPSTF Guidelines, as presented in 2009 include:

  • Before the age of 50, the decisions about screening mammograms should be made between a doctor and patient, taking into account the patient’s medical history & risk factors, as well as the known risks of the screening.
  • Biennial screening between the ages of 50-74.
  • There remains insufficient evidence about the risks and benefits of screening after age 75.

In formulating the 2009 guidelines, the USPSTF reviewed a total of nine independent, randomized trials on mammography, only one of which held strong data on women in their 40s (known as the Age Trial). Of these, not all of the studies were well-designed and not all of the outcomes were statistically significant, each being weighted accordingly when the team evaluated the studies and drew their conclusions.

So, why the uproar?

Leave it to the media to complicate matters. In just one example, after the 2009 Guidelines were released the LA Times wrote: “Oncologists were nearly uniform in their disparagement of the guidelines, fearing the loss of a valuable cancer-prevention tool. Women in their 40s account for at least a quarter of breast cancer diagnoses.”

The thing is, mammograms don’t PREVENT cancer. They detect it….

In fact, while mammograms are a wonderful tool, there remain important risks associated with them. The National Cancer Institute outlines them as follows:

  • Finding cancer is not curing cancer. The goal of a mammogram is to identify a malignancy early; before it can be felt on a clinical breast examination. But a small tumor is not necessarily a treatable one. Aggressive cancers, for example, may have already matastized (spread) through the body.
  • Risks of false-positives. When a radiologist detects something on an image it needs to be followed up with additional testing – diagnostic mammograms, ultrasounds, biopsies. Along with the risks from these test, and the associated costs, they can invoke long-term anxiety. Moreover, the likelihood of false positives are higher among young women, women with a family history of breast cancer, and women taking estrogen.
  • Risk of false-negatives. When mammography results appear normal yet fail to detect an existing cancer, it is a false-negative. False-negatives delay treatment and create a false sense of security. The NCI states that screening mammograms miss up to 20 percent of breast cancers that are present at the time of screening. This is especially true of denser (i.e. younger) breasts.
  • Risk of over-diagnosis and overtreatment. We know that some cancers do not need to be treated – that they will never spread and therefore not become life threatening. Mammograms also find pre-cancers that may or may not ever become cancer. In either case, since we are unable to distinguish between those that will become life-threatening and those which will not, they demand treatment and in some cases that will be overtreatment.
  • Radiation exposure. While the radiation exposure in a mammogram is low, radiation is cumulative. This risk needs to be considered when discussing the value of screening mammography and the age what which testing should begin, especially during a woman’s reproductive years.

My peers often ask me whether I’m upset about the USPSTF changes, especially by those who have a family history of breast cancer and are concerned that they will not be aggressively monitored. To begin, I assure them that this is not about them. Doctors will weigh a family history, especially a diagnosis of a first-degree relative, in their decisions to order screening. Doctors will hopefully weigh the anxiety that a family experience creates as well. But I also remind them that mammography is simply not as effective as we need it to be for the under-50 set. When breast tissue loses its density (anyone else sagging out there???), it is actually a bonus on mammogram – otherwise dark tissue becomes an almost white fat tissue on the film, allow a mass to stand out in contrast. Simply put, we must find better tools! But until we do, we must continue to weigh the cost-benefit of mammography.

Among the critiques of the change is that they were politically motivated, appearing as they did on the heels of 2009 Congressional health care reform bill. The truth is that the timetable for the USPSTF review was likely set long before the issues related to healthcare reform did. Moreover, if we are going to make healthcare accessible for all Americans, it is incumbent upon us to deal with cost-benefit issues, and that necessitates making hard choices. No one wants anyone’s cancer missed! And the adage that the early cancer is caught, the more treatable it typically is. I know how unpopular it is to say it, and how some will interpert this, but until something changes somewhere in our current system, the cost of health care will only continue to escalate.

Part of the challenge is that we respond emotionally. Cancer is scary. We hear 1 in 8 women will be diagnosed in her lifetime” and we seem to forget that means 12.5% of women. Yes, breast cancer seems ubiquitous, and I would be the very last person to suggest that we should not take this disease seriously. However, there is a “fear factor” that is not backed up by science. Moreover, we sometimes fail to distinguish between relative and absolute risk when we look at the effectiveness of mammography. Consider that the chance of a woman dying from breast cancer is about 1%. If you take the average 50 year old woman with and without screening mammography, you improve her chance of not dying by age 65 from 99.12% to 99.29%. How many false-positives, false-negatives, anxiety attacks, and unnecessary procedures justify a 0.07% improvement?

I wonder if, ultimately, we don’t wish for a set of guidelines that tell us what to do. Were it only that simple…. We have to remember that the guidelines are just that, recommendations based on a comprehensive review of the science. They lead us back to the heart of health care – a doctor-patient relationship. As patients it is upon us to share our histories, get informed, check our sources, ask questions and make decisions. We lean on our doctors as experts (which they must be, and not all are) to know the science, account for our individuality, explain our options, answer our questions and guide our decisions, including helping us separate good science from bad, and evidence-based decisions from emotion. It is a process of shared decision-making. Are we ready to take responsibly for that, or is it easier to blame the USPSTF?

13 Comments (+add yours?)

  1. Pink Ribbon Blues
    Jul 02, 2011 @ 07:07:40

    Thank you for this. It is an excellent commentary. You’ve really got a nuanced understanding of the situation as both a personal issue and a public health problem. I agree that, “we must find better tools! But until we do, we must continue to weigh the cost-benefit of mammography.” Without the complete information getting out to the public (which it seldom does, unfortunately), who will PRESS for this change? Who?? If not us, then who?


  2. Samantha Gluck
    Jul 02, 2011 @ 12:07:45

    Very good post! I especially like the line stating that mammograms do not prevent cancer, they detect it. Sometimes the idea that mammograms actually prevent cancer becomes inadvertently intertwined in the writing of authors and researchers — even when this is certainly not what they have tried to convey in the piece. Nice commentary.


  3. The Glamorganic Goddess
    Jul 02, 2011 @ 21:29:28

    Great article! I also am a Young Breast Cancer Survivor (31 when diagnosed 33 now). And I have recently decided that I am pretty much done with Mammograms for the time being (and maybe forever). I’m not comfortable with the fact that my doctors want me to have them twice a year (which are so, so ,so, so painful for me- especially after surgery and radiation). That is a lot of cumulative radiation (which causes Cancer), especially after radiation treatment from the Cancer, and when it states in my pathology reports that they can’t read them due to the density of my breasts! Often they have to take several pics (and I’m there for a few hrs) and brised an swollen for almost a month after each time… So it’s not just a one shot deal usually. I’m looking into alternatives like Thermography, etc. In my case, if I would not have found the lump, they would not have given me the mammogram. So it did not save my life, I did.


    • Lori
      Jul 02, 2011 @ 22:18:08

      Congratulations and thank you for sharing. You explain exactly what some of the misunderstood complications of mammography are. I hope you find the tool you need!!!


  4. Kathi
    Jul 05, 2011 @ 08:56:05

    Great post. And I think a lot of the emotion of this subject is really perhaps more about our inequitable, employer-based health care system, the role of third-party payers and how they decide what to pay for (or not), and the lack of accessibility inherent in the system. Additionally, not all PCP’s (Primary Care Physicians) and doctors in general are created equal, and too many may brush off the concerns of younger women with regard to breast cancer because of a simple lack of knowledge. Another bottom line is the need for better screening tools for breast cancer. Mammography, as we all know, is far from perfect.


  5. DrAttai
    Jul 05, 2011 @ 21:29:13

    What a great comprehensive post. I agree that we need better screening tools, especially in young women. However as breast cancer is not as common in younger women (although at least in my practice the numbers seem to be increasing rapidly) we also need more awareness among young women and their physicians that cancer can and does happen in women under 40. A 30 year old woman should not be going for regular mammograms, but should she be doing something besides self-exams? Seems to me yes, but what? Frustrating to see more younger women diagnosed with larger and sometimes more aggressive tumors and often these are women with no specific risk factors.


    • Lori
      Jul 05, 2011 @ 21:40:15

      Two thoughts….

      First, I wonder if the desire for reconstruction in both older and younger women is the same. If we are, in fact, seeing more young women being diagnosed (and I’m not sure we are…), would that account for what you’re seeing in your practice? I would love to hear more from your experience!

      Second, both the 2009 USPSTF, NCI and the American Cancer Society all leave self-exam behind. I understand some of their thinking. Not done properly, it gives a false sense of security. Done properly, we’re already catching those cancers quite late. And so we are right back to WE NEED A BETTER TOOL!


      • DrAttai
        Jul 05, 2011 @ 21:55:44

        I’ve always had a younger (than average) patient population, and while I don’t think in general the incidence of breast cancer in younger women is increasing, I’m seeing more in my practice. I still have many women age 65+, just a faster-growing number of younger women. Maybe my colleagues in the area are seeing the older patients.

        Lots of controversy with self-exam – my feeling is that women really should have some degree of comfort with their bodies and be able to recognize changes. And if there are changes (or even if you are not sure) – have it checked out, and don’t let your concerns be dismissed without a full evaluation. However I do understand the real issues and concerns with both false sense of security, and the scare of false alarms. There has to be some sort of happy medium. AND A BETTER TOOL!!

  6. Trackback: Pink Fatigue and Advocacy « Breast Cancer Advocate
  7. Paul
    Aug 06, 2011 @ 09:25:56

    And learning more and more.


  8. Lisa Audino
    Dec 07, 2011 @ 20:46:54

    Hi Lori,

    Great article! I too was diagnosed at 35 and had no family history. It was a blessing mine was found. 3 months after adopting twins from Russia I was diagnosed, when.weight loss during the trip made the golf ball size lump noticeable. I wasn’t too concerned because I had several fibroids in the past. When I went to my Dr. He said cancer was unlikely because of my age and family history. He did a needle biopsy and mammogram. The biopsy was negative and the mammogram was inconclusive because of the density of the tissue. I decided to have it removed anyways and went for outpatient surgery. I got a call a few days later that it was cancer. The doctor.missed the tumor when he did the biopsy.

    I told the doctors I waited a long time to.be blessed with children and I would not let my babies down by leaving them without a mom. My doctors used to.say I had every negative side effect but always came in smiling. When asked how I.could be positive, I would tell them there is a positive in everything. I was finally a mom. I got extra time off to spend with the twins that I wouldn’t have. And, I was blessed that they found it when they did.

    It is important that each situation be accessed.and treated individually. Mammograms are a tool but they are only part of the picture. Drs need to listen to their patients and patients need to be proactive, not reactive. It is your body, you know it best. If you feel that something isn’t right, then let them.know. have learned the things that seem trivial when put.together could be key.


  9. Annette
    Oct 24, 2014 @ 20:16:32

    I don’t get it. You previously wrote about your mom having breast cancer, yet here, you call yourself a cancer survivor with no known family history of breast cancer…


    • Lori
      Oct 24, 2014 @ 20:48:24

      Im not sure where I might have ledt the impression my mother had breast cancer. She has not and i do not have any family history. Perhaps it was the piece written by my son that caused confusion?


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