My husband and I host Thanksgiving every year and although not at Martha Stewart’s standard, I like to make the dinner tables pretty. Sometimes, John sets the table with our day to day plates and I say, “No, use the good plates.” The “good” plates consists of the full set of Franciscan dinnerware that my mother-in-law generously gave to me years ago. They match. There’s a gravy boat. There are enough for our extended family crew of 16-24 people, depending on the year. Matching, rarely used plates for fancy occasions.
Today I had a mammogram. I scheduled it many months ago. I remember telling my oncologist’s scheduler that I needed a diagnostic mammogram. She called over to the breast imaging center and told me that I didn’t need a diagnostic mammogram. I was due for a screening mammogram. I said, politely with a tinge of anxiety, “But I’ve had breast cancer.” She talked to the imaging center again and verified that a screening mammogram was what my oncologist had ordered.
I walked into the imaging center. It is in a building that adjoins my cancer institute, where I typically have my appointments. The cancer institute also does mammography. This time, I was sent to the building that is part of the same medical center but not part of the cancer center. Even though I’ve been there before, I was disoriented, even in the parking garage. I don’t have the best sense of direction on a good day but when I am nervous AND underground, it is much worse. The parking garage was packed and although I thought I was following the signs, I knew that I was anxious and distracted when I saw the sign, “Alligator” to show me that it was floor A, for the third time. I was driving in circles. I snapped out of it and worked my way down to “Camel” where I got a parking spot, wrote directions to finding my car after my appointment was finished, and went on my way.
As I walked into the waiting room, I had a sense of unreality bordering on derealization, a dissociative state experienced by individuals with PTSD. The waiting room felt unfamiliar but I knew I’d been there. Then I say myself there, in my mind’s eye. This is where I had the diagnostic mammogram, the ultrasound, and the core biopsy that would establish my breast cancer diagnosis and refer me to the cancer center, nearly three years ago. “Hello, trauma cue!” Once I recognized the cue for what it was, I could at least stop wondering and start coping.
The funny thing about this is that one reason I felt uncomfortable and scared was because I had been “demoted” to a screening mammogram and to add insult to injury, had to leave the safe and familiar nest of the cancer center, to do so. Mammography involves compression of the breast tissue between plates. I’ve had all kinds of mammography, screening, diagnostic, and PEM the latter being the fanciest and as it was in Phase II trials back in 2012, was not covered by insurance costing $2000 out of pocket. PEM took three hours following a 24 hour no-sugar diet and radioactive dye injection. Oh, and did I mention that each picture takes 7 minutes, all 7 of which the plates are compressed? Oh yeah, I just remembered that the PEM tech is seated right across from your eyeballs. But I digress.
I found myself in the waiting room thinking, “I want the good plates. I want the diagnostic mammogram.” Yes, I know, the difference between mammogram machines is not the plates. But do you blame me for thinking about the plates? (Ladies who do mammograms understand.) When I checked in, the receptionist asked, “Who do you want us to send the report to?” I provided her with the names of my physicians. Then I anxiously asked, “But I am getting a verbal report from the diagnostic radiologist during my visit today, right?” She verified that I was. Deep breaths, Elizabeth.
I changed into a gown and waited for the mammography technician. She soon greeted me and led me to the exam room. She was a very small woman, under 5 feet. As she was positioning the plates, I noted that she was about the exact right height for the job. She would not have to bend over at all to get a view of breast level for most women. I thought to myself, “Why do I notice things like this?”
She was skilled and efficient. I was lead back to the waiting room near the changing room. I waited. I was distracted for awhile talking to other women, waiting for their results. I answered some email. A woman called my name, a different woman than the mammography technician. I didn’t like this. She led me into an ultrasound room and asked me to partially disrobe, lie down, and wait for the diagnostic radiologist, Dr. Bang. She said, “He will give you the results and discharge you.”
“Uh-oh, there’s something suspicious on the mammogram.” Dr. Bang soon came into the room and introduced himself. He was a young Asian American physician with a nice smile and a professional demeanor. One of the first things he said was, “I see a 2mm mass in your left breast. It is probably a non-malignant cyst.”
My thought, “Yay, he’s being straight with me. He told me what was going on as soon as he could without being cold and abrupt. Hmm, but he also told me that he thought it was likely just a cyst. I hope he’s not one of those physicians who is afraid to tell the bad news. I hope this does not affect his judgment.”
He was very thorough, I must say. I looked at the images from the mammography. Besides thoughts to myself like, “recurrence”, I busied myself by noting how much less dense my breast tissue looked in the images than they had in 2012. As many of you know, having particularly dense breasts makes most of the imaging techniques difficult to interpret because water (the source of density) shows up as white, which is also the color that tumors look on the images. Density is reduced with age, as breasts take on more fatty tissue. I could see this change in myself, likely accelerated by my cancer treatment induced menopause through Lupron and over two years of taking Tamoxifen, which I will likely continue to take for nearly a decade.
I am a geek and a healthcare provider. I am very happy for this when I am getting a stressful medical examination. I can distract myself with wonder and fascination. I also joke with healthcare providers. This lot were pleasant but business like. Joking would not be a comfortable option. So I continued to practice paced breathing to keep myself calmer and to geek out on medical technology and to reflect on the the marvel that is the human body, post-mastectomy and all.
Dr. Bang was having trouble finding the 2mm mass on the ultrasound. I asked him if it was located in the part of my breast tissue that is still very dense. He said that it wasn’t and was in fact very close to the surface. Then I thought, “Oh, if the cancer is near the surface of my breast, maybe I can get a small lumpectomy. That won’t be so bad.”
I was also thinking about what the next step would be. Biopsy? Then I remembered that I had gotten a screening mammogram and that the next step is usually a diagnostic mammogram. However, in this case, I was given an ultrasound. Hmm. A memory flooded back to me. Cancer treatment is like giving birth. They tell you what is going to happen like they are invariable steps. But it’s not. There are rules of thumb that I can understand but the course of assessment and treatment can change. I’m not complaining. If I were cookie dough, the medical team could use cookie cutters to do their job.
Another part of my brain was planning who and how to inform people that I would need follow up assessment. Before, I was pretty sure that I didn’t have cancer. After all, only 20% of biopsies are malignant. Mammography has a notoriously high false positive rate. That is one reason that it is so widely criticized. Actually, the prime reason is that we keep getting the message in our culture that it is far more accurate than it really is.
After what seemed to be 500 years, Dr. Bang told me that the cyst had been present on my last mammogram but it seemed to have grown since then. “I don’t think it’s cancer.” He told me that he wanted to “watch it” and that meant having another mammogram in six months. In the past, I would have been hesitant to ask my “worry questions” but I asked away. “Will this be a diagnostic mammogram?” (“Yes”.). “Will it be a 3D mammogram?” (“Yes”.)
There is no cure for breast cancer. I have had a status of “No Evidence of Disease” since my mastectomy on 8/8/12, which was proceeded by two failed lumpectomies performed by a marvelous and kind surgeon. Three of my four invasive tumors could only be revealed after surgery. None of the imaging technologies, MRI, ultrasound, and three types of mammography that were used, found them.
I was diagnosed nearly three years ago. I have thought about cancer every single day since I was informed of the diagnosis. That is over 1000 days. I don’t want “the good plates”. I wanted the black and white plates. I want the plates of definite “I don’t have cancer” answers.
Cancer has provided me with a daily lesson that bad things, really bad things can happen. And I have learned to live a happy and satisfying life in the last three years despite all that my family has been through, a significant amount that has nothing to do with my cancer. Something that a pathologist looks for in examining an excised tumor and the surrounding tissue is for “clear margins”. A clear margin is the amount of healthy tissue that surrounds the tumor. Larger margins are better than small ones and if they are too small, as was the case with my first two surgeries, more surgery is recommended.
The “clear margin” is not magical or 100% accurate but it is meaningful. It is more than a good sign. There is always the possibility of disaster or hurt at the center of our hearts. I try very hard to live in the present and at present my margins are clear.