Living in the Gray Zone: A Story of Life with Breast Calcifications

In January 2014, after receiving (and tossing) three years’ worth of reminders from my ob-gyn’s office, I finally went for my first mammogram at age 43. My procrastination wasn’t due to a fear of getting a mammogram. I’d heard it was painful, but after enduring natural childbirth, a spinal tap gone awry, and a few wretched dental crowns, pain no longer fazes me. What I did have to overcome was a certain amount of embarrassment concerning my size. In other words, I don’t have a lot to work with. I’m flat as a board. The opposite of voluptuous. In a word, diminutive. But it was exactly the lack-of-size issue that made me delay getting a mammogram. I assumed that with my small size a lump would be pretty apparent.

As it turns out, a lump is like the tip of an iceberg. There can be unseen and unfelt trouble that can only be found by looking beneath the surface. In my case, my initial mammogram found calcifications in my right breast which required further investigation with stereotactic biopsy. To say I was shocked by the finding would be an understatement. It never occurred to me that I would have a problem without having a lump. I was intrigued by the calcifications. Each time I showered I looked down at my chest in wonder, imagining what in the world was going on in those little lumps. I’m a vegetarian, a vegetarian who probably for a long time drank more wine than she should have, but otherwise a vegetarian who has led a fairly healthy lifestyle.

This is all so unfair.

I received health counselor certification from the Institute of Integrative Nutrition (IIN).

I followed Hippocrates advice to “let food be thy medicine and medicine be thy food.”

I breastfed my son for over a year. Over a year for Christ’s sake! I thought that gave me a pass on breast cancer!

But hold up. I often had to remind myself that I only had calcifications, not cancer. That didn’t stop me from trying to overhaul my health to an almost unreasonable degree. Here’s the list of life improvements I created after extensive consultation with Dr. Google and my IIN books:

Exclusions:

Really limit sugar, dairy, gluten

No coffee (I switched to Matcha for a time)

No alcohol

Things to do:

Tapping (Emotional Freedom Technique, not tap dancing. Although, I’m sure tap dancing can be fun and therapeutic!)

Meditation

Acupuncture

Yoga

Dry brushing

Inclusions:

Turmeric tea

Matcha

Green juice (with parsley and cilantro)

Green smoothies

Salads with roasted vegetables

Oatmeal

Berries

Vitamin D

Liver supplement

Oil pulling

Iodine — Kelp

Chia and hemp seeds

Apple cider vinegar

Psyllium husk

(I can tell you from where I am in 2017, I haven’t stuck with many of these improvements. I do drink water spiked with apple cider vinegar everyday, often take a Vitamin D supplement, put turmeric on everything and top my avocado toast with hemp seeds. The rest are wonderful things, of course, but I can’t seem to integrate them into my daily life. Maybe one day.)

The Stereotactic Biopsy

The radiologist who was going to perform the procedure likened the ordeal to medieval torture. I thought that was an unexpected thing to hear from a doctor, but being a fan of humor and sarcasm in stressful situations myself, I appreciated his honesty. Once I entered the room, I could see what he meant. I was to lay face down on a narrow mechanized table with my right breast exposed and hanging (as much as my sad excuse for a breast can hang) through an opening in the table. Then, with the doctor sitting in a chair, the table would be raised to the proper height for him to enact his torture/perform the biopsy. Once I assumed the position, it was necessary to pull and stretch my non-hanging breast into a vice/x-ray machine that tightly clamped and squeezed it. The x-ray machine revealed the inside of my breast on a computer screen across the room, which I was able to see since my head was turned that way.

With my breast now clamped securely in the vice, a local anesthetic is administered. When the anesthetic has done its job, the radiologist inserts a hollow needle and, guided by the x-ray images on the computer screen, procures a core sample from the problem area. It wasn’t painful, but I had the sense of being a piece of fabric impaled with a sewing machine needle. Stab! Jab! Stab! When the radiologist felt he had a large enough sample, he shot a small titanium clip through the hollow needle that will mark the area from where the sample was taken. Gauze and tape were applied over the puncture wound and I was sent down the hall for another mammogram to ensure the clip is in the right place.

At this point, I start thinking about how much radiation I’ve been, and will be, exposed to and that makes me uncomfortable.

The results from the stereotactic biopsy were inconclusive and it was recommended that I undergo a surgical biopsy to extract a larger sample. So I did. It seemed as though I had no other choice. Once you know that there’s a problem, you can’t un-know it, right? I imagined myself being pushed into the front car of the cancer machine roller coaster and mentally buckled up to survive all the ups, downs, twists, and turns.

The first pathology report came back with a diagnosis of Ductal Carcinoma in situ (DCIS); however, my surgeon then had my sample sent to another lab for their analysis and they returned the diagnosis of Atypical Ductal Hyperplasia (ADH), which is a less serious diagnosis than DCIS which often (and perhaps needlessly-do your own research and come to your own conclusion) requires surgery, radiation, and medication.

I breathed a half sigh of relief upon hearing the ADH diagnosis, but then I asked my surgeon why and how she knew that it was the proper diagnosis. Her reply was that the second lab was “better” than the first lab. I kind of chuckled and scratched my head, but chose to not look the gift horse of a better diagnosis in the mouth. I mean, why would I want the worse diagnosis?

2014–2015

After that surgical biopsy I’m now advised to have a mammogram every six months and also have an MRI. I underwent those with no further abnormalities found, thankfully. I was also advised to meet with an oncologist to discuss preventative measures, such as taking tamoxifen. This felt like a sharp turn on my cancer machine roller coaster. A cancer doctor? Is this necessary?

I met with the oncologist twice, he was a very nice man working in a very depressing office. To get to the exam room I had to walk by the chemotherapy room and see people sitting in chairs hooked up to those machines and it was just awful. The doctor told me that there is “no guarantee” that tamoxifen would prevent me from getting breast cancer. On the second visit to his office I asked myself after walking by that chemo room, “why am I coming here when I don’t have cancer?” I declined the tamoxifen and I stopped seeing the oncologist. The thoughts of breast cancer receded to the back of my mind for the most part.

2016

Oh, 2016. I’m 45, in my 46th year of life. I’m without a doubt middle-aged and every time I look in the mirror I think of Nora Ephron’s book “I Feel Bad About My Neck.” I don’t know what’s going on with it. No, that’s a lie, I do know: it’s gravity pulling my skin down. As well as stress and too much wine (so much for the No Alcohol rule I established in 2014). I’m looking my age for, I think, the first time in my life.

Mid-life crisis aside, I go for my scheduled mammogram in January.

And the radiologist finds a new cluster of calcifications.

And my surgeon gets the radiologist’s report, calls me, and tells me to skip the stereotactic biopsy and go straight for the surgical biopsy. So I do, being on the cancer machine roller coaster and all.

And this time the diagnosis from one lab is Lobular Carcinoma in situ (LCIS). Again, not as serious as DCIS, so that’s a good thing, but I wonder why the sample wasn’t sent to a second lab.

I just received this diagnosis yesterday (I wrote this post in January 2016, but never published it), so as I write this I am wondering about whether I should have my sample sent to a second lab. I am wondering so many things. I am now advised to get one MRI a year as well as one mammogram. Mammogram in June and MRI in December. When I asked if I will have to keep getting biopsies when and if abnormalities are found, my surgeon laughed and said “oh, yes, you will probably be quite busy.” This does not sit well with me. My surgeon also advised that I resume care under the oncologist who will from this point on schedule all of my testing.

My new reality is that twice a year I have to undergo testing set forth by my oncologist that may result in more and possibly unnecessary procedures. All I have learned from the biopsies I’ve had thus far is that I am at a higher risk for breast cancer than people without abnormal cells.

My options are a.) stay on the roller coaster b.) get off the roller coaster.

By getting off the roller coaster I mean going back to yearly mammograms or forgoing mammograms altogether and switching to thermography or another less-invasive diagnostic tool.*

When I was first told that I had calcifications back in 2014, the radiologist asked me if I had had any trauma to my chest, a car accident, for example. Trauma can cause calcifications. I replied, “No, no trauma.”

Over the past two years I have learned that mammograms are fucking traumatic. My breasts, such as they are, are pressed and flattened under enormous pressure between two sheets of glass and then shot through with radiation. For many days after a mammogram, my breast are very sore and I often feel shooting pains in them.

Do mammograms, being traumatic, cause calcifications? Does the radiation from mammograms increase cancer risk? Is my cancer and calcification risk increasing with each mammogram?

I wish I knew. This roller coaster ride is scary, its safety is questionable and I’ll be on it for the rest of my life. Most likely. Unless I decide to get off, which is also scary and questionable.

I read this article in the New York Times last year. I think it and its comments illustrate just how muddled life is in the gray zone: http://www.nytimes.com/2015/03/18/health/breast-biopsies-dcis-atypia-diagnosis-leave-room-for-doubt.html?emc=edit_th_20150318&nl=todaysheadlines&nlid=67403374&_r=1

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*I’m not including many links in this essay because I don’t want a link to seem like a recommendation. I wrote this to help me achieve clarity on my situation and also to shed light on something that you may encounter in your own life.