What is up with mammogram recommendations?

If you are a woman between the ages of 40 and 50, and you have breasts, you just might find yourself wondering the following: What is up with mammograms? Do I need one or not? Why can I not get a straight answer from anyone? 

And if you are over 50, it's similarly confusing, the question is just slightly different. You know you definitely need a mammogram and you were well-indoctrinated by the medical system and media that you should get one every year, but now you're hearing something different: So, do I need a mammogram every year or every other year?

http://www.idealpharmacyla.com/index.php?id=24

Everyone you know and trust and want to believe is all over the map:

• Your mom (who you definitely love but who drives you a little crazy) calls on your 40th birthday to remind you to get a mammogram ASAP. "It's time, honey, she says, you're 40. Oh, and happy birthday."
• When you finally make an appointment to see your primary care physician for an annual exam, not only does she tell you that you don't need a pap this year (more on this in a different post), she also reassures you, "Things have changed, dear, and you don't actually need a mammogram until you turn 50." Sweet, you think. No cold duck bill in the yoni. And no mammo. Saved.
• Then, while sitting in the waiting room at your kid's dentist appointment, you read a really good article in a trusted magazine proclaiming that Obamacare requires that your health insurance pay for mammograms starting at age 40, every year. Huh, now you're really confused.
• A few days later, your best friend from forever ago calls to tell you she saw a great news special and she has firmly decided she will wait for the boob-squeezing to start at fifty and not a minute earlier. She's going to email you the link. She's sure you'll agree.
• And voila, the next day you get a letter in the mail from the local women's health center saying you are overdue for your annual mammogram.

What the heck?!

When to start mammograms and how often to get them is a super duper confusing, controversial, emotion-packed, historical-political-economical-statistical nightmare. And I will warn you from the start that I am not going to give you a simple answer. There is none. But I do want to walk with you through parts of the story, talk about the recommendations, review the numbers, generate a little discussion, and let you consider what's best for you.

(And stay out of your neighbor's business, she can decide what's best for her).

Let's start with my favorite advisory group, the United States Preventive Services Task Force (USPSTF). They are the ones that have generated a whole bunch of hoopla since their updated breast cancer screening recommendations were released in 2009. As I have explained previously, the USPSTF is a non-industry sponsored group of experts that looks at the best evidence we have for and against certain preventive services (e.g. mammograms) and makes recommendations to the best of their ability.  They make recommendations about HIV screening, colon cancer screening, blood pressure screening, the new lung cancer recommendations (see older post), baby aspirin, and more.

We hope they do all of this grounded in the best available science and as free from bias as possible.

In 2002, the USPSTF was in line with everyone else; they recommended that breast cancer screening (i.e. mammograms) start at age 40 and be done every one to two years.  However, in 2009, after reviewing some newer studies, the USPSTF updated their recommendations, now calling for biennial (that's every 2 years) mammograms starting ag age 50, ending at age 74. For younger women (those ages 40-49), they recommended informed decision making between patients and providers. In other words, according to the USPSTF, while women age 50-74 should get a mammogram every other year, women ages 40-49 should weigh the risks and benefits of screening mammogram and make a decision that feels in line with their personal priorities. Maybe you should, maybe you shouldn't.

Hmmm. . .and so begins the controversy. Or shall I say controversies, because there are two main issues that really set the country off:

1) Mammograms every other year: Before 2009, mammograms were recommended every one to two years, but, on the recommendations of their primary care providers, most women still did them annually. What does it mean to space mammograms out? Does that mean my health insurance won't cover an annual mammogram? What if something is missed? Why have I been told for years that women need a yearly mammogram? Are you denying me the right to know and delaying possible life-saving treatment?

2) Mammograms not automatically recommended from ages 40-49 raised even more concerns: I have friends who were diagnosed with breast cancer in their 40s. What if I am one of those women who is unlucky enough to have breast cancer in my 40s and it's missed? What if I want one at age 40? Why would I NOT want to know? What is my risk?

The updated USPSTF recommendations angered a whole lot of women, the politicians who represent those women, the powerful breast cancer lobby, and several professional medical groups as well. There was a literal revolt. Op-Eds were published in papers all over the country, local politicians held special meetings, breast cancer survivors and their supporters were up in arms.

The new recommendations were especially poorly timed because they were released right smack dab in the middle of health care reform, and many people took this as evidence that the US government was on their way to "rationing" care by limiting women's access to screening. People were worried that by endorsing delayed and less frequent screening, they were being offered second-rate health care.

Notably,  additional powerful groups that make breast cancer screening recommendations include The American Cancer Society, The American College of Gynecologists and Obstetricians, The American College of Radiology, The National Cancer Institute, The American Medical Association, and The American Academy of Family Physicians (AAFP). When the USPSTF took this leap in 2009, all of the other groups stuck to their guns (aka the older recommendations) that breast cancer screening should begin at forty; most advocate that they should still happen annually.

Four years later, the only group that has sided with the USPSTF is the AAFP. The issue is so touchy, in fact, that it is being treaty uniquely during implementation of The Affordable Care Act (aka Obamacare). A  section of the new law requires that all health insurers provider specific preventive health services to all people; those requirements are based entirely on current USPSTF recommendations, with one exception: breast cancer.

Rather than fund screening services based on the updated 2009 recommendation, the only non-current recommendation that will be implemented in the ACA is the 2002 recommendation. Huh. There is even a special asterisk on the list of preventive services saying just this. ("The Department of Health and Human Services, in implementing the Affordable Care Act under the standard it sets out in revised Section 2713(a)(5) of the Public Health Service Act, utilizes the 2002 recommendation on breast cancer screening of the U.S. Preventive Services Task Force").

Now that is power. Some people call this a victory. I call this terribly confusing. After all, if I should trust the USPSTF, the ACA should as well.  If the USPSTF is using good science, and good science has revised the recommendation, shouldn't we be using the revised recommendation?  Or, to the contrary, if the USPSTF is using bad science and the recommendation is bunk, shouldn't it be thrown out?

Certainly makes me wonder  (particularly late at night when I should be sleeping) what is behind all this? It is science? Is it emotion? Is it fear? Is it something else?

So what is up with the USPSTF recommendation? Are they rationing my care? Who should I believe?
In my mind, the USPSTF stands apart from other groups as the least biased advisers we have on many health care issues. Though not perfect, they are probably the best we have. 

Our other options, like those mentioned above, include groups that often stand to benefit, either financially or emotionally from the financial side of that service. For example, we have:

• The Radiologists, who stand to make more money the more mammograms women get AND, to their credit, probably truly believe the more imaging the better (that's their specialty, after all)
• The Gynecologists, who are worried if women don't get an annual gyn exam (including pelvic, pap and mammo), they might run out of things to do and business to keep themselves afloat (they are also believers in what they do)
• The Various Cancer Societies, who rely on the emotional impact of the personal struggles of people with cancer to raise funds for basic science research and services (both good things) but, in so doing, may occasionally forget that there are lots of people who don't have cancer

In an ideal world, all these groups would have your best interests in mind, but in the real world, you have to be a little skeptical. Or at least thoughtful.

Here are 4 questions I would love for you to consider when making your decision about when to start and how often to do a mammograms: 1) Do screening mammograms save women from dying from breast cancer? 2) Is a screening mammogram going to prevent ME from dying from cancer? 3) What's the harm of doing a mammogram earlier (i.e. before 50)? 4) What's the deal between every 1 year to 2 years?


1) Do screening mammograms save women from dying from breast cancer?
 The answer is yes, probably.

If you are a woman between the ages of 40 and 74, screening mammograms have been shown to reduce breast cancer specific mortality. (Remember: Screening means you 1-Don't have additional risk factors (like a personal or family history) and 2- Are having it done when all is well and fine, not when you notice a lump. If you meet either of these criteria, screening goes out the window). It's actually pretty tricky to figure out how much mammograms reduce this risk, but for women ages 39-49, getting a mammogram probably results in 15% reduction in mortality. For women 50-69, getting a mammogram results in about 22% reduction in mortality.

That being agreed upon, one of the most sensitive areas of discussion right now is how to determine whether or not mammograms actually over-diagnose (they probably do) and lead to unnecessary over-treatment. In other words, how do we know whether a mammogram that detects a cancer  is actually detecting a stable cancer that would have stayed static (i.e done nothing) for years?

As physicians, we see a problem-- especially cancer-- and we feel compelled to treat it. This is what most patients want, right? So, what if we never knew that cancer was there (i.e. no mammogram)?  Or what if we diagnosed the cancer and did nothing but watched it?  Without question, nowadays, as soon as a cancer is detected, a woman is immediately immersed in the craziness of cancer treatment. The question that remains is, does she need it?

Remember, breast cancer isolated to the breast doesn't actually kill people; breast cancer that spreads outside of the breast does. We know beyond a doubt that breast cancer kills (in 2009, over 40,000 women died of breast cancer in the US alone). But is all breast cancer the same? Doctors and patients like to assume that by finding cancer in the breast and eradicating it, we are doing a good thing, but some researchers are wondering how true and universal this might be. 

2) Is a screening mammogram going to prevent ME from dying from cancer?
Great question, impossible to know. This question actually begs two further questions: First, am I going to have breast cancer? And will that breast cancer kill me? Remember, there are lots of other ways to die. If you are over 50, odds are you will die of a heart attack. If you are under 30, odds are it will be a car accident.

The older we get, the more likely we are to get breast cancer (see data table). In the US, in total about 130 per 100,000 women will get breast cancer. About 25 per 100,000 will die from breast cancer. Unless you are black. Then  the number is higher: 35 per 100,000. (see graphs). If you live in California, your risk is different of getting and dying from breast cancer than if you live in Texas (see maps).

In medicine, we often talk about how many people we need to test or treat, to get a certain outcome. The is called the Number Needed to Treat (NNT).  The USPSTF uses these statistics in their formal recommendations,  and I think it's helpful to consider them because I am not sure I am in agreement.  From the available studies we have, the number we need to invite to screen (NNI)  to prevent one breast cancer death depends on how old you are:

if you are           this many women your age need to be screened to prevent one death
ages 40-49         1904 women
ages 50-59         1339 women
ages 60-69         377 women

In plain English, 1904 women ages 40-49 need to have a mammogram to prevent one woman from dying of breast cancer. 1339 women ages 50-59 need to be screened to prevent one woman from dying of breast cancer. And in the 60-69 group, 377 women need to have screening  mammograms to prevent one woman from dying of breast cancer.

If you are that one lady that lives, then gosh darn it, you are lucky and you are so happy you were screened. But, remember, overwhelming odds are that you are one of the 1903 others. Or the 1338. Or the 376. But the question I struggle with is whether or not there is really a difference between the 40-49 group and the 50-59 group? After all, there are definitely and without a doubt some women in the younger group who will get breast cancer.

Am I willing to subject 1904 of my patients to mammograms to prevent one woman from dying? I don't know the answer, but it doesn't sound unreasonable. After all, I don't want any of my patients dying from preventable causes. I certainly feel like I should at least offer them the educated choice.

3) What's the harm?
A false positive is a test result that is wrong. The test says you have the disease but you actually do not have it. False positives in breast cancer screening are higher the younger you are.  This is partially because breast tissue is denser in younger women. Also cancer rates are lower. But it's mostly because the more mammograms you have, the more likely someone (i.e. the radiologist)  is going to see something that looks abnormal, call it positive, and recommend follow up.

When screening begins at age 40, the cumulative probability of a woman receiving at least one false-positive recall after ten years is 61% with annual and 42% with biennial screening.  The cumulative probability of false-positive biopsy recommendation is 7% with annual and almost 5% with biennial screening (see this citation for more specifics, you nerds).

So, if you get your annual mammogram, there is a 60% chance in the next ten years that you will have an abnormal result that will turn out NOT to be cancer but will likely stress you out, require follow-up appointments and decrease your quality of life temporarily. There is a 7% chance you will wind up with an unnecessary biopsy.

There is a lot of debate about how disruptive these false positives are and whether or not they actually matter to women. In fact, more than once, I have had patients follow up after a false positive result proclaim something like, "I am so glad I had this done!" That woman feels relieved and happy to have been told something was wrong and then, upon further consideration, to be reassured. This is odd. The end result would have been the same with or without the mammogram (she doesn't have breast cancer) but somehow going through the test, getting a positive result, having follow-up testing, and then getting good news, has some people coming out the other side feeling well-taken care of. 

Is this our goal? Should it be? 

Is more better?

http://www.cfhi-fcass.ca/publicationsandresources/Mythbusters/ArticleView/08-07-01/f701d4d0-53b8-4bad-bbca-a370194455ec.aspx

Don't forget, the other harms of mammography include radiation (the equivalent of 15 chest xrays, that's WAY less than a CT scan) and pain (many patients really hate the boob squeezing component of mammograms), copays (though those should be disappearing with the ACA implementation), cost to the health care system (billions of dollars) time away from work for appointments, stress about the test itself, and more. 

Nothing comes without a cost.

4) What's the deal between every 1 year to 2 years?
If you are between the ages of 50-69, the evidence shows fairly convincingly that there is no increased risk of missing something by spreading out your mammograms to every two years. This applies even if you are on hormone replacement therapy or have dense breasts. You may still be getting a letter from your local radiologist that you are due for your yearly mammogram, but take a moment to reconsider before you pick up the phone and schedule your appointment. You are probably doing yourself a greater favor waiting for another year to pass by.

The story is only slightly different for younger women. If you choose to start earlier screening between ages 40-49 and have extremely dense breasts (about 12-15% of women in this age group meet this criteria), then biennial screening probably does have an increased risk of missing something. Ask you radiologist where your breast density falls. Then decide if you should be having annual versus biennial screening. Remember, 85% of women in this category should be able to comfortably do mammograms every two years and feel confident that are fulfilling their preventive health goals. (You may reference this article for more details). Also please remember, the more often you have mammograms, the higher your risk of your false positives. This may be a risk you are more than willing to accept.

This is a really really good time to talk to your primary care provider. Weigh the potential risks with the benefits and make a decision that feels right for you. Sorry for the complexities. Thanks for sticking in to the end. Ultimately the decision is yours.

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Additional references:
http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=all&_r=0
http://www.aafp.org/afp/2012/0115/p176.html
http://jama.jamanetwork.com/article.aspx?articleid=1722196
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3699693/#!po=52.5000
http://online.wsj.com/article/SB10001424127887323539804578260241902140764.html
http://annals.org/article.aspx?articleid=474984
http://www.ncbi.nlm.nih.gov/pubmed/17404352
http://www.ncbi.nlm.nih.gov/pubmed/22037165