Are my breast cancer and I on the wrong side of statistics, or just caught in the confusing and potentially devastating conflict between medical societies about when women should start breast-cancer screening?

One morning more than a year ago, it didn’t seem like either. As both of my kids cuddled in bed with my husband and me, I started the conversation I’d been dreading.

“Remember when I went to the doctor a few weeks ago?” I reminded my children. “Well, it turns out they found a bump in my boob. If it stays, it won’t be good for me. So we have to take it out.”

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“What is it?” my 7-year-old son asked.

Because his grandfather had recently died, I was afraid to use the word “cancer.” But I also knew he was smart enough to figure it out. So I took a deep breath and continued, “Bumps like this are called cancer.”

His eyes got wide. “It’s not what Grandpa had,” I added quickly. “I have a different kind of cancer, and I’m going to be fine.”

At the time, I believed I was telling him the truth.

I had discovered the lump three weeks earlier during a random breast self-exam. I was 45 years old with a very low risk of breast cancer. The lump was so small I wasn’t even sure it warranted attention. But it also felt the kind of “different” I had been warned about when I was taught to do self-exams at age 16 — slightly harder and less likely to move around than the rest of my breast tissue .

In the spirit of due diligence, I went to my local breast care clinic to get the lump checked. I wasn’t concerned enough to bring my husband or a friend.

I met with a physician assistant. She began by doing a clinical breast exam, but couldn’t find the lump until I pointed it out to her. That led to an ultrasound, which led to a mammogram — my first — which led to a radiologist being concerned enough to perform a biopsy that afternoon.

Through it all, I remained calm. Due diligence, I kept thinking, that’s all this is. Never in my wildest dreams did I consider that I could actually have breast cancer.

But I could, and did, despite my kale salads, low-risk genes, and overall good health.

It started out as the curable kind, the kind where, after a grueling treatment regimen, you come out a “survivor.”

But to the surprise of my medical team, post-surgical scans revealed that my 3-centimeter tumor, which some of my doctors estimate had been developing for at least five years, had decided to kick up its heels and travel beyond its original location. This landed me in the far more terrifying and uncertain journey of metastatic breast cancer, otherwise known as stage 4 breast cancer. This is the incurable stage, the scary stage, the stage in which the odds of surviving beyond five years plummet.

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I am the mother of two small children. Their well-being is intricately linked to my own. It is nothing short of devastating that I could very well die before they finish elementary school. Yet I am somehow learning to accept this fate.

I have learned that life is as much about showing up for each other’s suffering as it is celebrating each other’s accomplishments. I have learned that the robust health I enjoyed for 45 wonderful years was a privilege. I have accepted cancer as one of my great teachers, and I am finding my way down this unexpected path.

I have had a much harder time accepting that I was not screened for breast cancer before it was too late. Not because I couldn’t be bothered, was too anxious, or didn’t have health insurance, but because the guidelines for screening women in my age range are one hot mess of a controversy, and I fell through the cracks.

Two years before my diagnosis, when I was 43 years old, I asked my doctor if I should get a mammogram. I had a vague understanding that breast cancer screening protocols were in flux, but I wanted to be sure. My risk profile for the disease was very low. I was nursing my infant daughter, and I really did not want to stick my breasts in a vice grip (it’s not really that bad, but that’s how I was imagining it). My doctor told me that if I didn’t want a mammogram, I didn’t need to get one.

Her counsel was based on a set of widely used guidelines at the time that say having a mammogram is an “individual” decision for women under 50 at average risk for breast cancer. She had no reason to believe I was at risk, and I had no reason to believe I should question her judgement.

What I didn’t know, at the time, was that there are multiple and conflicting breast cancer screening guidelines for women between the ages of 40 to 49.

The confusion began in 2009 when the U.S. Preventive Services Task Force upended longstanding breast-cancer screening protocols by recommending that women with an average risk of the disease start having mammograms every other year at age 50, instead of at age 40. They cited concerns about false positives, anxiety, unnecessary treatment, and overdiagnosis. Their new guidelines were met with tremendous controversy and have not been universally adopted.

In 2015, the American Cancer Society changed its longstanding guidelines, recommending that women of average risk start having mammograms at 45, instead of 40.

The American College of Radiology, an organization of physicians on the front line of diagnosing cancer, among other things, has never wavered from its recommendation that women get their first mammogram at age 40.

This table says it all. There is almost no agreement between the seven major institutions that establish breast cancer screening protocols, especially for women in their 40s. Women and doctors depend on the recommendations these groups make. But which one should we use?

Each organization backs its recommendation with data. What I and many other women have trouble understanding is how essentially the same data generate such different recommendations.

In my case, early screening would almost certainly have detected my hormone-driven cancer early, before it was able to spread. My treatment would have been relatively straightforward (though no treatment for cancer is really “straightforward”). I would have been in the group of women with breast cancer in which the majority go on to live long and healthy lives, as opposed to being part of the group in which most do not.

But there are also stories of women who either do not benefit from early screening or who get put through treatment hell for cancers that never would have become life-threatening.

Who is on the wrong side of statistics?

Last year, in the United States alone, approximately 250,000 women were diagnosed with invasive breast cancer. Approximately 36,000 of them were between the ages of 40 and 49.

Smart, dedicated people are deeply engaged in this issue. But while they compare data sets, grapple with the statistical significance of lives like mine, and churn out conflicting guidelines, far too many women are left confused and misinformed about what is best for our health and long-term survival.

Leda Dederich is a mother, educator, and patient advocate.

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  • There used to be a reason we had physicians that made these decisions. Now the guidelines designed to ensure profits for the insurance companies, are informing the decisions. A physician should have been able to find the outliers, instead the decisions are made by industry paid insurance lobbyists. There is no one tracking the excess deaths, and more complicated surgeries due to following the guidelines. The guidelines were never meant to be law, but thanks to industry meddling, and the for profit system, the guidelines could be a death sentence.

  • I am one of the instructors for Practising Wisely – a course that outlines the Choosing Wisely approach to screen, lab testing, periodic health exams, etc. making recommended approaches to issues like Breast Cancer Screening. In Canada we initiate informed consent for women for Mammography at age 50. Based on the Canadian Task Force on Preventative Health (a similar organization operates in the US) the 50-59 yr old group of average risk women have an absolute benefit from mammography of a mere 0.13% for escaping a death due to breast cancer versus those who are not screened. The risk of harm far outweighs the risk of benefit in the 40-49 yo group unless the individual has an increased risk (due to family history). Screening for breast cancer is only slightly better than that for prostate cancer for men so women should be given the option and information regarding potential harms and benefits rather than a nonchalant generalized ‘all’ should be screened approach.

  • What an important commentary. I was one of the lucky ones who had mammograms starting at 40. By the 3rd one they found a mass. It was absolutely tiny (2 mm) but aggressive. I had a bilateral mastectomy and no further treatment needed because my radiologist caught it so early. I get so frustrated when I read about doctors who don’t tell their patients that if you have breasts- you are at risk for breast cancer. Period.

  • It takes a special person to turn personal adversity into advocacy – imagine the world if more people shared your generosity? First and foremost, thank you, Leda!
    We are all confused by the differing standards and recommendations regarding breast cancer prevention. My insurance company, Blue Shield of CA., in their “2018 Adult Health Maintenance Guidelines and Checklist” states that a woman would receive a mammogram “every 2 years from ages 50-74” unless they have a history of breast cancer in which case they should “ask their doctor when to begin screening and how often between the ages of 40-49.” Should I consider myself lucky that my mother is a breast cancer survivor which means insurance will cover the cost of my mammograms starting at 40??? The irony is that, from what I have read, family history is no longer a predictor of a women getting breast cancer, as in your case. That is a statistic that needs to be known! If more women are getting breast cancer without any family history, why the distinction?
    Mammograms and pap smears are two of the only preventative tests women can take to detect female cancers in its earliest and most curable stages. With breast cancer and sexually-transmitted diseases on the rise, it makes no sense that the medical community has extended the recommended timelines of testing for both.
    Thank you for shining a spotlight on this issue, for the benefit of our daughters, mothers and women everywhere.
    With love, Carrie D.

  • I think that the newer guidelines for mammograms are really weighted towards costs rather than health. I was upset to read your story, but there are others that are similar. The wife of one of my co-workers was told that lump on her breast that she found at age 33 was “nothing,” and she had stage 4 breast cancer by the time she got a proper mammogram and diagnosis. A female relative was told that she could stop getting mammograms after age 74 – another questionable “guideline,” and unfortunately she accepted that recommendation. She found stage 4 breast cancer way too late…
    All I can think of is that women must think of their family history and desire for continued good health, and insist on getting regular mammograms – regardless of these guidelines.

    • Thank you for your comment, Marsha.

      I want to make sure readers are also aware that the Affordable Care Act mandates coverage for breast cancer screening starting at 40 –https://www.healthcare.gov/preventive-care-women/

      Leda

  • The story above is heartbreaking, but all too common. The lifestyle guidelines that we all hear are just smoke and mirrors. I have breast cancer but mine was caught just in time (routine mammo) and mine tested to be not very agressive.
    I am a medical professional who has been involved and both research and clinical laboratory science and it seems to me breast cancer is out of control.
    I breast fed, exercised, ate mostly organic etc., etc. It is ALL nonsense! My oncologist said it does not matter what you eat or drink, etc. Just keep relatively healthy so when you get cancer you can withstand the treatment.
    We have run/walked and collect money in the millions, if not billions over the last 10 years but it matters little. The money helps researchers develop highly expensive drugs to TREAT. BUT where is the PREVENTION? Given that many cancers are caused by virus, it is highly likely, a virus is involved in this one as well.

    Commonly, statisticians find ways to “link” one thing or another to the WHY of cancer. It is an effort in frustration about the REAL WHY of it all. There is shamefully little scientific effort in finding out WHY. VIRUS is causative in many. The HERPES GROUP of viruses, for example, are responsible for a shocking list of cancers, yet, to date there is NO VACCINE. A strain of the common Epstein-Barr virus (kissing disease) a member of the group (above) is known among researchers as “The Cancer Virus”. Many of these are passed-on to offspring (either the virus itself) or the mutation the virus caused. That’s why cancer “runs” in families. These ‘links’ to cancers are merely statistics and don’t pass meta analysis. Multiple sex partners, failure to use protection make life happy for cancer-causing viruses to spread throughout humanity with reckless abandon. The”PILL” contributed to this in a big way. HPV is currently the only cancer vaccine, yet it was a known cancer-causer since the 1970s!
    THIS IS UNACCEPTABLE! STOP BLAMING THE VICTIM AND FIND THE REAL CULPRIT! Read, “The Story of Ebstein-Barr Virus” The Cancer Virus” by Dorothy H. Crawford, Rickinson and Johannessen

  • Thanks you for a very thoughtful article. The debate you highlighted is not unusual in medicine. We can generate a bunch of statistics about how many lives are saved, how many people are hurt by various diagnostics and interventions. We use science to generate those numbers, and we can eventually take them as fact.

    How many women MUST be screened to save one life is a question of since. How many women SHOULD be screened is a question of values. If we did ten mammograms to save one life, would it be worth it? I think everyone would give that a resounding “yes”. But what if were 200,000 women?

    The balance point will be different for different people, none of whom can be declared “right” or “wrong”.

    Still, this internal debates among health care professionals and patients is frustrating and confusing.

    • “How many women MUST be screened to save one life is a question of since. How many women SHOULD be screened is a question of values.”

      You left out a critical question: how many will be harmed by screening? That too is a question of values.

  • I’m 44. I’ve been getting mammograms every year since I was 40. I started shortly after my youngest was born. This summer, I had a biopsy and in August I had surgery. Luckily it wasn’t cancer. I have a follow up in February. Thank you for bringing attention to this issue. Perhaps, I’m one of those women who received “unnecessary treatment and overdiagnosed”. But with a young child, I’m not willing to take the risk.

    • Exactly! I think they should do them or a sono yearly at your gyn visit. I also think they should do an US on your ovaries to check for cancer since it’s usually not found until it’s too late. I’d rather live to see my kids grow up than not.

  • Leda –

    Thank you for writing this article. First of all, I am so sorry. Secondly, I currently have three very important women in my life – my wife and two young adult daughters. To your point, we are blessed with resources, so getting ahead of the disease at the right time is not an issue. Thank you for opening my eyes to this issue.

    Lorenzo

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