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machado: old breast cancer screening guidelines have nothing to do with good outcomes
it's reckless not to review guidelines that determine when and why someone is screened for breast cancer, especially as we learn more about who is most at risk.
dec 12 2022
6 minute read
breast cancer screening guidelines were first developed 25 years ago. getty
years ago, i signed up to train for a marathon for a charity event.
as part of the preparation, which included getting proper running shoes and cute running gear, i was required to have a physical. the doctor i saw was covering for my regular doctor, who was off on a sabbatical.
we discussed family history as he checked my blood pressure and filled out a requisition for blood work. we talked about familial links to heart attack or stroke, diabetes and cancer. he gave me the all-clear to start training, and then asked if i had any other questions. i was putting my jacket on when i asked about breast self-exams.
some experts claimed self-exams didn’t improve outcomes
my question was partly due to the fact that in my work as a health writer, i had been hearing that some medical professionals were no longer recommending that women check their breasts regularly because of research that showed self-exams did not improve outcomes and was ineffective in detecting cancer.
around the same time, support for clinical breast exams (cbe) — a physical exam done by a health-care provider — was also being hotly debated. cbes combined with a mammogram were once linked to a lower risk of death from breast cancer, according to the american cancer society, but as the efficacy of mammography improved and women learned more about the symptoms to watch for, studies found that cbe did very little to help detection. there was also emerging evidence that cbes along with mammograms increased the rate of false positives.
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but there was another reason i asked the question.
it had been just days since a mom of one of my son’s friends stood on my front porch handing me a backpack and a pillow for a birthday sleepover as she burst into tears, muddling her way through a story about how she had just been diagnosed with breast cancer. it was a random find, she said, a mammogram done at her request because her sister-in-law had been recently diagnosed and she was feeling nervous. my friend didn’t fit any particular risk category, but her doctor did the test anyway to ease her mind. after hearing her story, i, too, was feeling a bit nervous.
when i asked if he could quickly do an exam, he said that doctors didn’t do breast exams anymore. then his eyes fell to my chest for just a moment.
“you’re pretty small, you’d probably see a lump or at least feel it in the shower,” he said with a smile. “i usually tell women to have their partner do a check.”
besides the fact that all three comments were wildly inappropriate, he was wrong.
breast size does not affect your risk for developing breast cancer, according to rethink breast cancer. and sure, sometimes there are visible clues, like the skin over the lump may be red, or weirdly dimpled or resemble the bumpiness of an orange peel, there may also be changes in the size of the breast or its shape, or discharge from the nipple. but not always.
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six months later, i was brushing dog hair off of my t-shirt when i felt something hard just below the skin near my collarbone and above my right breast. i didn’t see it or feel it in the shower and my partner did not find it.
“it’s probably nothing”
when i saw my regular doctor a few days later, i was lying on an examining table as he pressed his gloved fingers firmly on different areas of my chest. first, he checked the ‘normal’ side, moving in circular motions, from my armpit to my collar bone to around my left breast. then he did the same thing on the right side. i pointed to the spot.
“do you feel it?” i asked. he nodded, but said nothing.
and then, as i laid there studying his face for clues as to how worried i should be, he did that thing that doctors sometimes do when they are suspicious, but don’t want to let on: he stopped the friendly chatter, and stared off in the distance at nothing in particular as he pressed the spot i had pointed to. he tried to move it, he squeezed it. then he stood up and crossed his arms while taking a step backward to lean on the edge of his desk.
“so, it’s probably nothing,” he said. “you’re young, and breast cancer doesn’t run in your family.”
of course, we know that neither youth, nor familial history (or lack thereof) give a definite pass from the risk of breast cancer. but i let him off the hook. i was too busy freaking out.
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“but you’re going to check it, right?”
the next week, i was at the princess margaret cancer centre getting a mammogram, but it wasn’t easy getting there. it had taken a long conversation about the fact that, despite his almost-certainty that it was nothing, whatever was in my chest was going to cause me a lot of worry and anxiety and well, what if.
what if.
that there were all types and ages of women, a few men, too, in the clinic that day waiting in backless, grey hospital gowns wearing nothing but their shoes wasn’t surprising. but the sheer number was shocking. it was practically standing room only.
when my name was called, i held the back of my gown closed as i walked through the doorway where a tiny nurse in a pink uniform was waiting, smiling. as i got close, i noticed her shirt was printed with green four leaf clovers.
she had a nice voice — calm, like she wasn’t one to be easily rattled. while asking how my weekend was, she showed me how to lean my upper body into the machine.
“a little more,” she said, laughing when i made a joke about mammograms not being made for people with small breasts.
as she pressed a button, she fired questions at me: when did you feel it? does it hurt? does anyone in your family have breast cancer? when it was over, she walked me out and called the next person — a man who looked to be about 30. as i gathered my clothes, i could hear her ask calmly about his weekend.
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the phone rang three days later. it was my doctor saying that the mammogram had showed a cyst — “something to keep an eye on” — and i felt all the things you would expect. there was relief and also gratitude, of course. i was also glad that i insisted on having it checked, if only for my peace of mind. i was reminded of how much work it takes to be patient sometimes, just to feel safe.
my friend’s cancer was caught early, but she still needed radiation and chemotherapy, both of which were very hard on her physically and emotionally. she’s now cancer free, back at work and fully engaged again as a busy mom of four. but what if she hadn’t thought to ask for a mammogram? what if her doctor had decided to stick to screening guidelines and refused her the referral?
what if.
it’s with these experiences in mind that i read the recent calls from breast cancer advocates for a review of screening guidelines — guidelines (first developed 25 years ago) that were last updated four years ago, which is a lifetime when you consider how fast research and new treatments in cancer can change. in fact, as three leading advocates, andrea seale, mj decoteau and cathy ammendolea, wrote in an opinion piece this week, we know so much more today about the critical factors that determine risk, like family or personal history, being a carrier of gene mutations like brca1 or brca2 or having dense breasts. can we expect that this new knowledge is reflected in dated screening guidelines?
or perhaps the more relevant question is, do these guidelines that have not been updated for four years make it possible for canadians to make informed decisions about screening and, ultimately their health? it’s not clear, which seems ridiculous given there are lives at stake. what is clear, however, is the importance of taking the lead, being informed about our risks of disease and proactively seeking the ability to monitor ourselves appropriately. it’s the only way to ensure better outcomes.
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despite the debate that still continues around breast self-exams, a study done this year found that the majority of breast cancers are found by patients — so keep checking (here’s how).
lisa machado is the executive producer of healthing.ca. follow her @iamlisamachado.
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