Mammogram Myths: Fears, Facts & Firsthand Experience

Komen Staff Member Gets Her First Mammogram

When I first started working at Komen Central Indiana, I disclosed my fear of getting a mammogram by saying I had heard it compared to having one’s boobs slammed in a car door. Both fortunately and unfortunately for me, my sounding board was our education coordinator – Wendy Noe – who dedicates her days (and nights) to fighting the myths surrounding mammograms.

“Mammograms are the best tools we have to catch breast cancer early,” she said. “I’d rather have mine every year and know I have the best chance for survival than not do it at all just because I’m scared it will hurt. And it’s not even close to as bad as childbirth.”

While I still can’t speak to childbirth, I can now speak to mammograms. And what every woman should know is: while they might be awkward and uncomfortable the first time around, it is well worth it to put to rest any fears of the unknown.

What a Mammogram Is & What It Does

Mammography is a screening tool that uses X-rays to create an image of the breast. These images – mammograms – are used to find signs of breast cancer such as tumors, small clusters of calcium (microcalcifications) and abnormal changes in the skin. Mammography is the best screening tool used today to find breast cancer. It can find cancers at an early stage, when they are small and most responsive to treatment.

MY FIRST MAMMOGRAM

To be semi-knowledgeable on this subject, our board president arranged for me to have a mammogram.

While it may not seem like the luckiest thing to have a mammogram arranged on my behalf, I was actually very fortunate. Since I wasn’t 40 years old and didn’t have a referral from my physician – no symptoms or family history – an exam would not have been covered by insurance, and thus also would have been cost prohibitive for me. But even among women whose insurance does cover mammograms, only half are getting them annually (see study).

BACKGROUND CHECK

Before the appointment, a patient navigator called to get my information, including age, ethnicity and family history. To understand the reasoning behind each question, I inquired about the relevance of each as it pertains to breast cancer.

Age. While the American Cancer Society recommends getting screened starting at age 40, there are exceptions. If you have a family history of breast cancer, you should start getting screened 10 years before your relative’s age of diagnosis.  While rare, younger women can get breast cancer—approximately  5% of all breast cancers occur in women under the age of 40.

Ethnicity. While Caucasian women are more likely to be diagnosed with breast cancer, African American and Hispanic women are more likely to die from breast cancer. Studies abound behind potential reasons for this, but the common thread is receiving a later stage diagnosis, having more invasive forms of breast cancer and/or struggling with treatment compliance (due to finances, transportation, aversion to hospitals, etc.).

Family History. Initially I took comfort in reporting no history of breast cancer, but what I know now is that 90 to 95% percent of cases diagnosed are women without a family history. Of the one in eight women diagnosed, only one has a history. And since they still can only pinpoint risk factors but not a direct cause, there is no surefire way to prevent breast cancer.

WHAT TO EXPECT WHEN YOU’RE EXPECTING

I’m not going to lie: I dreaded this appointment for weeks. I dreaded it aloud in an office of coworkers who were quite unsympathetic to my perceived plight, as some had already had more mammograms than I had birthdays. I was going into the mammogram knowing that the younger you are, the denser your breast tissue. The good part for me—and everyone else getting their first mammogram—was going in knowing it would likely be the least comfortable mammogram I would ever have since my estrogen levels (and therefore breast glands and density) diminish with increased age.

When I checked in, they asked a few more medical history questions:

• When was your first premenstrual cycle? This determines how long your body has been generating estrogen—the longer it’s been, the more your risk factor is increased.
• Are you currently or have you previously been pregnant? This question is for two reasons. One, because changes in hormones from or during pregnancy can affect breast density (typically making them more dense). Two, because if you are pregnant they don’t want to damage a fetus with radiation from an X-ray. On a grown adult, the radiation is minimal and far outweighs the risk—in fact, you can get more radiation from flying in a plane (you can read this article to find out why).
• Are you using birth control pills? Again, birth control can increase estrogen levels.
• Have you ever or are you currently using hormone replacement replacement therapy? Women particularly use these during menopause. Adding estrogen can make breast tissue more active than it should be later in life, which can result in glandular inflammation.
• Do you have a family history of breast cancer? This can increase your chances for breast cancer if you carry the BRAC (“breast cancer”) gene. Sometimes insurance covers this test, but it’s still not common—it runs around $5,000 per test. Those with the BRAC gene have a 55% to 65% likelihood of developing breast cancer.
• Have you ever had a hysterectomy? Having your uterus removed can decrease your estrogen level. Having ovaries removed can send you into post-menopausal phase, which means your hormone regulation is off balance.

After answering and asking about the above questions to the best of my ability, I sat in the waiting room with a few other women. As one of two external body parts that separate us from men, breasts are a very personal and female issue, which makes such a waiting room all the more intimate. What I have come to find out since then is that for the women going through treatment, the waiting rooms don’t necessarily have to be so private in nature; that friendships are built with the other women who can relate to what they’re going through.

When the radiation tech called my name, I am pleased to report I did muster the courage to walk into the office instead of out the exit. She escorted me into a small changing area connected to the screening room, where I put on a dressing gown and used a baby wipe to remove the deodorant from my underarms. The reason behind this is that deodorant clumps can show up as abnormal or suspicious lumps, bumps or calcifications.

X-RAY VISION

In the screening room, there was a large machine in the middle that was for conducting the mammograms, which are a low-dose X-ray digital image that can find cancers too small to be felt by hand.

As far as I could tell, I had no lumps, although there could have been one so small or buried so deep I wouldn’t have known about it. Although self breast exams and clinical breast exams can identify lumps, it can take several years for them to ever grow large enough for you to notice, and that’s assuming you have the type of breast cancer that manifests in a tumor instead of the invasive kind, which has no lump at all. This is why, if you can tell that something isn’t right with your breasts, you should talk to your physician immediately to determine whether a referral is needed.

My imaging tech was Melanie Clemons, whose mom passed from metastatic breast cancer after being diagnosed at her first mammogram screening. She was very patient and meticulous with positioning me in such a way that the machine would be able to take an image that included everything—breasts, nipples, underarms (lymph node area) and back into the pectoral muscle to have a shot of anything that might be buried deep beneath the breast tissue.

The actual compression was done both horizontally and vertically– two plates pressed together from the left and right, then the top and bottom—and only last about 10 seconds total, during which time I was advised to hold my breath so the image would be as still and clear as possible. I left my right breast bare but used an FDA-approved mammopad on my left, which is supposed to make the experience a little more cushioned without diminishing the quality of the x-ray (3 out of 4 women report it makes it more comfortable). The left still hurt more with the mammopad, but when Michelle pulled up my images on the screen, I understood why.

Michelle explained that my left breast was fibrocystic, which is common (more than 60% of women have fibrocystic breast/s) and is sometimes referred to as “lumpy breasts.” Essentially, that my left breast had more fibers and air pockets that made that tissue denser and therefore more difficult to press through during compression. And while we can see our images on the small monitor in the screening room, radiologists look at them later on a much larger screen to see things that might not be noticeable otherwise. Radiologists also have an ICAD (imaging computer-assisted diagnosis) program that help catch potential trouble spots.

OVERALL RATING / REVIEW

On a pain scale of 1 to 10, I give my mammogram a 3 average. If anything, it ranks higher in discomfort and awkwardness, just like going to the gynecologist.

In the future, I plan to handle mammograms like one of the women I know: make a day of it with friends or family so we can wait together then play together afterwards to have it be an event to look forward to.

OTHER BREAST CANCER FEARS & BARRIERS

To find out what other challenges women encounter and how they can be overcome, I spoke with two patient navigators: Claudia Davis and Marcia Beckwith. Both are oncology nurses and Certified Breast Care Nurses, and have worked together for four years guiding patients through diagnosis.

In addition to their fear of mammograms being unfamiliar or painful, women also can fear the diagnosis. They said many more fears and problems can accompany breast cancer, citing: fear of dying, loss of self, loss of body image, relationships, intimacy, finances and time. With time in particular, breast cancer can require taking off for treatments while also working enough to maintain wages and health benefits, all of which can take away from personal and family time.

“Breast cancer is not going away just because you’re afraid of it,” Claudia said. “Early detection can literally be the difference between life and death—at Stage 1 or 2, you have a much higher cure rate.”

Women with little or no insurance who might want a mammogram rarely are covered for preventive care, which is the necessary first step to detection and treatment. To help assist them, local resources are available to help enroll them in qualified programs and connect them to breast health services, such as the nonprofit Little Red Door Cancer Agency in Indianapolis that serves eight counties.

Even women who do have insurance don’t necessarily make mammograms a priority. Claudia reported that of the women who received written orders for a mammogram from their general physicians, not all of them took the referral to the clinic. As a patient, women can be referred but not forced to attend. To better accommodate work and home schedules, some clinics are now open some evenings and/or weekends to make sure working women have time to get their mammograms.

Once women do get their first mammogram, some think that means they’ll continue being okay. Davis said it’s an education process getting people to understand the importance of regular mammograms.

“I think there’s a false sense of security that if you get mammograms, you won’t get breast cancer,” Marcia said. “Mammograms don’t prevent breast cancer; they’re just detecting it early.”

BREAST HEALTH INFO

As parting words of wisdom and advice on the matter of breast health, I am parroting/paraphrasing what my coworker Wendy says at the Breast Cancer 101 trainings and Lunch & Learns she does at organizations throughout Central Indiana:

“Know your body, know your breasts, and be your own health advocate—ask questions, ask for second opinions if necessary. Know that one of the best ways to take care of your loved ones is by making sure you take care of yourself.”

For more information on breast health, signs and symptoms, you can go to www.komen.org.