Push Until You’re Certain: Trust Your Gut
The new year always makes me excited. I usually come crashing hectically into the end of a year so I love the chance to refresh and revamp. This year, 2018, I was even more optimistic. I was looking forward to a much-needed trip to Spain after a vacation-less 2017. I finalized my divorce in October and was coming out of it really ready to move forward. I even did one of those assessments to find a word for the year and this year was going to be all about balance. I finished grad school in 2016 and got my dream job, but never really took the time to find that work-life balance that is non-existent for PhD students. I was finally going to get to have the fun part of your 20s where you make money, don’t have kids yet, and get to spend your weekends as you please.
The other pretty cool thing about the new year is that my birthday is January 3rd. It was a good one this year. My boyfriend (Joe) treated me to the 8-course tasting dinner at my favorite sushi restaurant. The news had been calling for snow all day and I was anxiously hoping I’d get a snow day for my birthday. Everything in NC shuts down when it snows so work closes and we get to stay home. Mid-way through dinner, we looked outside and it had started snowing! When we got home, we took our puppies to the dog park and ran around laughing and playing like children.
That’s the last time I remember being happy.
Thursday, January 4th: my annual gynecology trip
My doctor was checking my breasts and felt a mass in my right boob. She told me about it, had me feel it, and the rest of the appointment was a blur. Joe had driven me because of the snow and I was shaking when we got in his car. I could barely utter the words to him. Once home, I called my parents, still shaking. My dad picked up and I asked him to get my mom. She was playing outside with my sister on a rare Charleston snow day. He began describing their snowman to me with excitement, “That's no ordinary snowman, she's making a dog! On top of your sister’s car. I can’t believe it!” I could hardly listen to what he was saying. I just wanted to get the words out of my mouth, but couldn’t. Finally, between bouts of my dad’s joyful laughter and my exasperated short quick breaths I said, “They found a mass.” I could feel the shock of the news echo through the phone as they processed it, wrecking the joy they were experiencing moments before. The playful lightheartedness in their voices that had been so clear was replaced with vacuous, empty, heavy silence. I was shaking more than before, inconsolable. I couldn’t be calmed by them or anyone else. I cried all day. Luckily, while we were processing the news, my gynecologist got me in for an ultrasound the next morning because of snow day cancellations. I couldn’t have waited any longer.
Friday, January 5th: in n out ultrasound
Here’s the synopsis: A technician at an imaging clinic spent less than 5 minutes looking only at the breast with the mass, then told me nothing was there and that I had nothing to worry about. I never saw the radiologist himself.
It didn’t make sense to me. If nothing was there, why did I feel a distinct mass? I know I’m young and my breasts are dense but there must be another way we can see it. I even asked the technician about getting a mammogram or doing a biopsy. She annoyedly reassured me that, “You can’t biopsy something that’s not there.” She was certain we had taken the necessary precautions. I called my gynecologist later that day. She also insisted I was fine. She read the radiology report aloud to me and explained we were being cautious by having it imaged.
I spent the weekend tormented. The only clear memory I have is holding Joe and crying together face to face. Somehow I knew already that they were wrong and I had cancer. We researched the 2 best university hospitals in the area, found the breast clinics, and wrote down the phone numbers for calls first thing Monday morning. I worried I was being crazy and overreacting but I knew I had to do more.
Monday, January 8th: selling my case
I felt the need to convince the receptionists on the phone to let me have an appointment. I was not old enough to get a mammogram. Everyone knows mammograms are for those 40 and up. Plus I already had the mass checked out and was told it was nothing. So in an effort to snag an appointment, I told them my entire backstory of having a strong family history and having a palpable mass. It worked! But I knew already my goal for that appointment was more than a mammogram. I was going to leave with a completed biopsy: the only surefire way to know if it was cancer. I waited 2 more days.
Wednesday, January 10th: let’s try all the equipment
The first thing the technician running my mammogram did was ask me about the results of my previous ultrasound and probe me about why I was having follow-up imaging. I was as vague as possible with her about those results because I was so afraid she would say they didn’t need to image me. She wanted to have the original ultrasound results transferred and I insisted I would rather have them do their own tests.
Here’s what went down:
Mammogram on both breasts, high magnification imaging on right side mass
High magnification mammogram imaging of suspicious new masses on left side
3D tomosynthesis imaging of both breasts
Ultrasound with a radiologist. She spent an hour imaging both breasts and lymph nodes. She then walked me through the results of the mammograms, told me about microcalcifications she could see around the mass which indicated rapid turnover of cells (aka cancer), and that she wanted to biopsy me that day.
Clinic visit to see a nurse practitioner (NP) in the breast surgery unit who told me I had a ‘baby, baby mass’ that was probably nothing, not to worry at all.
Enrollment in a research study (I had to say yes, I’m a scientist).
Core needle biopsy. My first ever surgical procedure, definitely more painful than I expected. But I had left with the confirmatory test I had wanted so it felt worth it.
After 9 hours at the clinic (a much more thorough appointment compared to the first 5 minute ultrasound), I arrived at home and the first thing I did was read my visit summary written by my radiologist in the online chart system. At the end of all of the notes, she gave me a BI-RADS score of 5: highly suspicious of malignancy. I immediately googled this and saw that it meant I had a 95% chance of having breast cancer. I was devastated. For me, this was the let-down, lose-all-hope moment. I have never cried so hard or so loudly. When my parents (who had come into town for the tests) got back from the gym, I told them what I had read. My mom sternly told me we still didn't really know and we should not assume. That is not what I needed from her. I didn’t need any more denial or anyone to tell me I had nothing to worry about. I had everything to worry about. I fought back with her angrily. I’m a realist and a scientist and 5% is just too small a number to give me any hope. Looking back I feel bad for yelling at her. She was just processing the news and being a mama bear. That sort of thing happens with news of this gravity. Not all moments will be perfect and everyone processes it differently (will post more on this later!).
The whirlwind of the day replayed in my head. I kept thinking about the clinic NP telling me I had a baby, baby tumor and nothing to worry about. She told me all of this even though she had already read the radiologist’s report and knew my BI-RADS score. I researched her and found out she had 20 years of experience and lots of notoriety. I felt manipulated. I want my clinicians to be real with me. Why give people false hope?
Friday, January 12th: diagnosis day
I went in to work to distract myself. I got to my desk and within minutes I had a call from that clinic NP. She told me I had invasive breast cancer that was triple positive, that we may need to do chemo first, and to call her back with any questions. That was it.
I didn’t know what stage I was. I thought that doing chemo first usually meant you were worse off. So what else was she not sharing with me? Within minutes I had came up with at least 10 more questions, called back, and left a message for her. I waited on her call all day.
My phone rang at 5 pm. Here’s the gist:
Me: Thanks so much for getting back to me. I have some questions.
NP: I have 20 other calls to make before I can go home and start my weekend. I haven’t released your biopsy report because I don’t sit at my desk all day. I have 300 other patients.
Me: Why do you think I might need chemo first?
NP: YOU’RE 28 YEARS OLD. YOU HAVE INVASIVE CANCER. YOU’RE GETTING CHEMO, PERIOD.
Yes, those are shouty caps and yes, that really happened. Unsurprisingly, I was still incredibly stressed and didn’t have answers to any of my questions. So I emailed the radiologist who had done my ultrasound and biopsy. My amazing radiologist came to my rescue with a call at 6:30. It’s Friday night, she’s at home, and I can hear kids in the background. She called me on her cell and told me to call her back on that number anytime. She answered all of my questions (I’ll share these questions in a later post!). I felt much more informed and I felt like I had an ally. Having someone that I could tell cared about me that was willing to make time for me gave me so much more peace.
That's the terrifying, disturbing story of how I got diagnosed with breast cancer.
Wisdom from the unwise:
I knew the genetics: I’ve always been worried about breast cancer. I'm a cancer researcher. I did an internship at the #1 cancer center in the world. I shadowed a genetic counselor there and learned all about the BRCA mutation. After that summer I was inspired to have my family tested since my aunt had breast cancer very young. She tried but her insurance wouldn’t cover it since she was cancer free for more than 10 years. Every year I talked to my gynecologist about it but nothing ever came of it. I tried to be proactive, but I wasn’t proactive enough.
I had first-hand exposure: In 2017, I saw a highschool friend who was 28 get diagnosed with breast cancer. I didn’t check myself. I also attended the funeral of my Farsi school teacher who died from breast cancer. I still didn’t check myself. Not once in all of 2017.
So here are my messages to all of you: Check your breasts every month, trust your gut if you do think something is wrong, and fight for yourself. Find your rescue radiologist, and don't be stopped by the rude NPs with years of experience who can't be bothered to spend more than 5 minutes on a diagnosis call or the technicians who question why you need a second opinion. You're your own best advocate. The scariest part of all of this is that I could still be walking around thinking I was cancer free. And so many young women do.
In case you were wondering, these were the 8 courses we had on my birthday. It was so strange, they had models there posing with each course #sushic.