Mammogram Bill in NYS

I've just read some positive news: A bill approved by the NYS Legislature in hopes of increasing the early detection of breast cancer would require that women be given notice in mammography reports if they have dense breast tissue, which makes it difficult to detect cancer.

I just wrote a letter to Governor Andrew Cuomo to urge him to sign the measure. Any fellow New Yorkers who wish to email the governor may do so here.

However, it's only one step in the right direction.

I am living proof that even a sonogram may not pick up existing tumors.

I had a baseline mammo at age 34, because of family history. I was vigilant about screening and health care exams. At age 40, during a SBE (self breast exam), I felt something hard, something different. I immediately went to my OB/GYN. Since I had a mammogram months earlier, he sent me for a sonogram. I was relieved, but puzzled, when I was told it was nothing. I did what no woman should ever do: I gave up on SBEs. I should have followed my gut, which was telling me something wasn't right. But the tests showed otherwise, right? Why should I keep checking, only to bother the doctor, to have tests that show nothing? In hindsight, of course, I should have insisted on a biopsy.

Here's the kicker: a biopsy wouldn't have revealed anything. Why? Because in order to do a biopsy, a sonogram must zero in on the questionable spot. If the sonogram isn't picking up on the questionable spot, how can a biopsy be properly performed? It can't!

When I had a mammogram at age 42, the day before Thanksgiving in 2003 (I was given this appointment three weeks after being told they wished to repeat the mammo and conduct a sonogram because of "dense breast tissue"), I was informed I had at least three tumors; at least one was "highly suspicious of a malignancy." I asked the doctor how she knew this already, without benefit of a biopsy; she said that most benign tumors were cylindrical; malignant ones had spidery veins.

It took three more weeks to get an appointment with a breast surgeon; two weeks after that, a needle-core biopsy. Two medical professionals labored for three hours to obtain fluid samples to perform the biopsy. They struck a vein, and blood poured down into my neck and hair as they attempted to stop the bleeding.

About three days later, while I was at work, a nurse called with the results. I held my breath. "Benign!" she said. Huh? Puzzled again.

I saw the breast cancer surgeon for a follow-up on my biopsy. He said whatever they removed during the biopsy may have come back benign, but it didn't match what he had seen in the other reports. He insisted on an excisional biopsy; this took about another month to schedule.

During my follow-up, I was told, "It's not good." He informed me and my husband that I had three malignant tumors that were 5.5, 3, and 2 centimeters in size. I had lobular cancer (something I had never heard of), and that lobular cancer is difficult to detect in mammograms and sonograms.
"Do the women of America know this?" I asked, since I consider myself fairly well-read, and I had NEVER heard of this (which is tough to hear for the first time when it applies to you).

My thoughts flooded back two years earlier, when I had complained of a lump, and the mammo & sonogram failed to pick up on it. I had given up on SBEs, assuming the tests would pick up on it. I was WRONG.

According to the University of Washington Department of Radiation, "Lobular tumors are notorious for hiding within breast tissue."

The only message I can tell women (or men with women in their lives, to pass this message along): you must be your own best advocate. You know your body better than anyone else. You must push forward if you feel that something foreign has developed in your body. The sad news is that at least three exams, the mammogram, sonogram, and biopsy may not even pick it up. The only test that will ultimately discover the tumors is an MRI, which is extremely expensive and not covered by most insurance.

Fortunately, exams are moving along a lot quicker for patients these days. When I think that I saw my OB/GYN for an annual visit in September 2003, and it took until Halloween to get a mammogram appointment, then the day before Thanksgiving to get a repeat mammo and a sonogram, several weeks to see the breast surgeon, two more weeks to schedule a needle core biopsy ~ only to hear the results were benign (meanwhile, I had cancer), and another month for an excisional biopsy ~ to be told on February 4, 2004, that I had lobular cancer, it makes me shudder. I am truly fortunate to be alive, eight years later. I endured multiple surgeries, chemotherapy, and radiation.

Each day is such a gift, and I'm extremely grateful to my doctors for saving my life.

Check out: Breast Cancer Facts Every Woman Should Know.