'We Are Pleased to Inform You...': Why 50 Percent of Mammogram Reports Are Misleading

How many of you have gotten a letter that starts out this way? This greeting is always followed by the good news that your mammogram was negative for breast cancer. No abnormalities were seen. I got 24 letters just like this from the radiologist, one for every year since age 40 that I had a mammogram, and only one the year before that required a follow-up biopsy. As it turned out, they were hunting down calcifications that didn't look quite right.

I will never again suffer the discomfort and indignities of a stereotactic biopsy again! I was asked to lie face down on a surface that allows your breast to hang in mid-air by gravity while they poked it repeatedly and incessantly with a long needle as though drilling for oil. After an hour or so, the white flag went up and they reported they found nothing. Phew! I felt I was home free and could put that worry (and this torture!) behind me.

I didn't actually believe, deep down inside, that I was ever going to be a breast cancer patient. However, there's nothing like having that letter in hand to tell you that you were right: "We are pleased to inform you." Despite having a maternal and a paternal aunt with metastatic breast cancer, I was fairly optimistic and didn't see myself going down that road. After all, I breast fed both of my infant daughters. That had always been listed as a factor in prevention. And I led a fairly normal life re lifestyle and nutrition. And I was a nurse...breast cancer wasn't going to invade my body without me knowing it!

The following year, the negative breast biopsy result was proven to be wrong, wrong, wrong!! It was a false negative!! The radiologist totally missed a huge lobular carcinoma that had been growing for years (according to my oncologist) in the very spot they were poking over and over. I found the tumor one day while in the shower, a shocking revelation! I was responding to an itchy sensation in the lateral left breast where I discovered a hard mass. Probing even deeper to where the itchiness was emanating from, I discovered the mass was fairly long. I don't need a medical degree or certification in oncology to recognize this meant trouble.

This very scary "thing" I discovered inside my body caused me to react swiftly. But my two week wait to see a gynecologist was wasted time! He said he couldn't help me. He was able to palpate the mass, but said I needed to see a surgeon, the "breast specialist" kind. Feeling an adrenalin rush, I was upset I was given this appointment. I was very clear when I called that I had found a breast mass! Why didn't his office staff inform me then that I needed to see a breast surgeon?!? Don't answer that. It might be considered disrespectful to the profession. In the final analysis, that two weeks made no real difference in my outcome: Stage 4. But that's not how you feel when you're seeking life and death answers about the state of your health. You want sirens blaring, red lights flashing, and immediate drop-everything-attention to your problem!

Later, the radiologist told me that dense breast tissue clouded over the tumor and they didn't know what they were looking at. Great!! An ultrasound or MRI would have to be done to identify what was going on in those whitish cloudy areas. I couldn't believe they weren't inquisitive enough to order follow-up tests! When I asked the breast surgeon why I never had F/U testing done after they saw all these ambiguous images on my mammo films, she replied that insurance won't pay for the testing. That's why they don't order it. 'Why won't they pay?' I asked innocently. "Because there are too many false positives, as many as 50 percent," she said. That didn't sit well with me. I don't care if 50 percent are falsely positive!

What about the 50 percent that are true positives?!? Are we going to ignore them and allow them advance to Stage 4, like me? Why must we be sacrificed to keep healthcare costs down? Every life is important. Playing God with our lives to rein in health care dollars, to me, is irresponsible. That explanation went deep into my core and stayed with me. It sunk my spirits pretty low.

Then along came the Are You Dense? movement with Nancy Cappello, PhD, a Stage 3 breast cancer patient. After a similar experience, she began an amazing cascade of events by obtaining the first enacted legislation in her home state of Connecticut for Breast Density Reporting. She provided exactly what is needed to correct this unfair issue, and to reveal the 'best kept secret' about the limitations of mammography in identifying breast cancer in women who have dense breast tissue.

Mammograms miss approximately 1 in 2 breast cancers when there is density... that's 50 percent. I don't see the insurance companies balking at paying those bills like they do F/U tests! With the new legislation, the radiologist must inform you if you have dense breasts, then he must order follow-up tests (an ultrasound and/or MRI) and the insurance company must pay for it. No more Happygrams as Nancy calls it....those misleading results some of us have gotten for years.

Dense Breast Reporting has been legislated in 24 states as of this date. In addition, Dr. Cappello and Joan London, TV personality, breast cancer patient, new BC advocate, and big supporter of this proposed Bill were on 'the Hill' in Washington DC recently. They met with Dianne Feinstein, US Senator (D), California, to talk about the federal bill, known as the Breast Density and Mammogram Reporting Act. If passed, it would make this legislation a Federal law in all states. I thank Joan for her great support and applaud Nancy for her years long efforts to improve the accuracy of breast cancer reporting and to save lives!