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Maybe I should just let it go. As I’ve been told at least twice since I “resumed normal activity,” I look just like myself. You would never know, unless you asked to see, that I really don’t look like myself at all. Hidden under my clothes, since the DIEP flap reconstruction that ushered in my new year, is a trivial but nonetheless relocated belly button, its circumference now dotted with tiny red scars. Below it, a thin scar, reminiscent, ironically, of a pinkish ribbon lain across my lower abdomen, literally from hip to hip, with angry red reminders on either end where the JP drains had pulled excess fluid. And then there is the matter of my right breast. Not really. Not right. It is in the shape of a breast, impressively so, now that the swelling is barely perceptible and the almost-aubergine bruising faded to pale green.  Its skin is the same, spared by the mastectomy that removed its cancerous tissue through a very small incision around the areola also removed with its nipple.

Ironically, larger breasts were never on my wish list except on the day my surgeon told me that my cancer was not amenable to lumpectomy given its proximity to the nipple. That and my small breast size. Essentially, she didn’t have enough to work with. In the course of our conversation, it became clear that this surgery would require additional time and effort, not to mention skill and patience. Her meticulous notes would later confirm for me that “dissection was very difficult given the very small circumareolar incision used for the skin-sparing mastectomy.” Reading through the details of my surgery, I conjure a mental picture of my surgeon in the operating room, at that time when my breast tissue was “elevated off the pectoralis and delivered from the wound.” Quite a spectacle.   I imagine the relief she would subsequently convey to my waiting and weary husband when she determined that “the frozen section was negative for metastatic disease,” that there were no abnormal nodes, that no further dissection would be needed. She had removed all the cancer she could see and could go about her day knowing she was leaving me in the hands of two highly sought after plastic surgeons, one being one of the best in Phoenix, the other a master of the DEIP flap procedure, who had flown in the previous evening from Texas. Together, they would do a stellar job. And they did. Still, I find myself drawn to the unfamiliar realm of the macabre, where I ponder my right breast, now a mastectomy specimen preserved in a container of formaldehyde solution. It weighed 294 grams.  Less than a pound. I imagine the reconstructed breast is the right weight too.

But it’s not quite right enough. I’m told the upcoming nipple reconstruction and/or tattooing will help. Between us, I find this prospect altogether bizarre. Had I known a tattoo was in my future, I like to think it would have been a most carefully considered piece of body art, something subtle, cryptic even, in homage perhaps to my ancestry or signifying a youthful reinvention of myself as a carefree career woman tossing her hat in the air à la Mary Tyler Moore. My mid-life crisis was not supposed to come in the form of a breast cancer diagnosis.

Like untold numbers of women, I believed that everything I needed to know about my breast health was all wrapped up in the “negative” that had been ascribed to three mammograms. Negative in the positive sense. Nothing bad. I am angry that I had been sent on my way each time, blissfully unaware of the sneaky cancer growing in my right breast, evading detection, being ignored for as many as 7 – 10 years according to my surgeon. Had someone bothered to tell me what Dr. Susan Love told Oprah five years ago, that dense tissue can appear white on a mammogram just like cancer, I like to think I would have asked if perhaps my tissue was dense, if there was any chance that dense tissue could be camouflaging a cancerous tumor. And in the conversation that would have ensued, surely as an informed patient, a participant in my own healthcare, I would have asked for or been called back for additional imaging, an ultrasound that would detect what the mammogram may have missed. But I didn’t know to ask, and no one thought to tell me. Why wouldn’t someone have shared such critical information? Finding the answer to that question is a bit like trying to find a cancer in dense tissue like mine using only a standard mammogram. As Dr. Love explained:

It’s like trying to find a polar bear in the snow.

It’s not that I completely neglected my breast health, mind you. I had a baseline mammogram at 35, one at 40, another at 45.  A waste of time and money, in my case. In the end – or at the beginning – I found the lump. Eventually, after 14 years, I was plain lucky, or, as my mother swears, I was led to it by something bigger than all of us. It was an ultrasound – not a mammogram – that detected the tumors, and so launched my family and me into cancer territory and a chain of events that have left us forever changed. The kind of chain I first considered over thirty years ago, when my English teacher, Mr. Jones (the kind of teacher who changes lives), taught me the importance of supporting my ideas about Pip and Estella by quoting from the novel. To that end, I distinctly remember underlining in red and committing to memory this from Great Expectations:

That was a memorable day to me, for it made great changes in me. But, it is the same with any life. Imagine one selected day struck out of it, and think how different its course would have been. Pause you who read this, and think for a moment of the long chain of iron or gold, of thorns or flowers, that would never have bound you, but for the formation of the first link on one memorable day.

More memorable than learning I had breast cancer was learning that I may have had it for a long time. It is not lost on me that had I known, I may have been able to actually do something about it.  I suppose I shouldn’t be angry when well-intentioned friends assume I must not have shown up for my mammograms. They probably know as little as I did about mammograms and tissue density. The point, however, is that I did show up. Faithfully. And for my trouble, information was withheld from me, and I was denied access to early detection. And that is just not right.

I suppose I shouldn’t be surprised.  The myth of the mammogram as a perfect test for all women has flourished for too long. Its imperfections align perfectly with so many aspects of the fairy tale that equates early detection with cure, promises prevention, and typically paints all cancer the same color. I’m a little too old for fairy tales. Frankly, I’m a little tired of having to find out so much for myself. As a tax-payer living in 21st century America who grumbles about it but is glad to be able to pay for health insurance, I should expect, at minimum, full disclosure about the details of my own physiology. I should expect a radiologist to tell me if there might be something impeding the standard mammogram – something like my dense tissue.

Thankfully, someone like Dr. Nancy Cappello is in my corner, advocating for the thousands of women who “already have two strikes against them—cancer missed by mammogram and cancer that will most likely be detected when palpable, thus at a later stage.”  The founder of Are You Dense, Inc. Dr. Cappello’s advanced stage breast cancer was not detected by mammogram. She received the all too familiar all-clear on annual mammograms since the age of 40. No family history and no idea until an ultrasound revealed it, that her dense breast tissue was hiding her cancer. In A No Brainer, she urges us to support representatives Rosa DeLauro (CT) and Steve Israel (NY) who have proposed federal legislation requiring that “every mammography summary delivered to a patient after a mammography examination, as required by section 354 of the Public Health Service Act (commonly referred to as the `Mammography Quality Standards Act of 1992′), contain information regarding the patient’s breast density and language communicating that individuals with more dense breasts may benefit from supplemental screening tests, and for other purposes.” I have to agree that a federal mandate is the way to go, but these days, I have my doubts.  At this writing, only 15 of these United States have introduced or are in the process of drafting legislation to ensure that information about density is communicated clearly to patients. Arizona is not one of them. At the risk of being inflammatory, it occurs to me that there are some, in Arizona, who seem much less interested in proposing legislation to hunt down the cause of breast cancer than they are in proposing legislation that would allow hunters to place silencers on hunting rifles or citizens to carry guns in all public buildings. Sobering to consider such notions in light of our state’s Department of Health report that 3,400 women are diagnosed with breast cancer each year. These women don’t appear to be a priority in a state known more for its stance on immigration than its commitment to finding out what contributes to this harrowing fact (AZ Department of Health):

Arizona has the lowest cancer rates in the United States, but most are diagnosed too late to survive.

I was disheartened to learn that Are you Dense? has no active legislative progress in Arizona. How can that be? The Arizona Cancer Registry reported just last year that “one third of all breast tumor cases would be diagnosed after the cancer had spread beyond the breast.” After.  I am left to  wonder how many of these women would have benefited from being informed earlier of their breast density. I know I would. Unfair and wrong that there always seems to be so much more to the story of breast cancer that unfolds in front of me, the details sharpening and coming into focus, not unlike an old Polaroid developing right before my eyes. Except, it is agonizingly slow and I have to work much harder to get the whole picture.

Within the context of my right breast, the cancer it harbored, the costly and complex process to reconstruct it, “right” is more verb than adjective. Things would have been just and right, I believe, if I had been informed of my breast density and its impact on the results of my mammograms. So let’s make things right for those who are D.E.N.S.E. and support the legislation introduced by Representatives Rosa DeLauro (CT) and Steve Israel (NY). I urge everyone to contact their Federal Representatives and ask for their support of HR 3102.