I Found My Breast Cancer During the Pandemic—and the Trauma of a Double Mastectomy Left Me With PTSD Symptoms
The water is frigid. I have fallen through the ice and am gasping for air. Am I drowning? Will I be able to find the hole in the surface of the frozen pond? I wake up in a deep sweat. Another dream, the same dream. I always wake up before I make it to the surface, so I never know if I survived.
This dream is not entirely random; it actually happened when I was 10 years old. I fell through the ice of a frozen pond in the dead of winter in New Jersey. In real life, I made it to the surface and was pulled out to safety. I have been having this dream for months now ever since I was diagnosed with breast cancer in July 2020. No one can rescue me this time. I am no longer 10, but 52 years old. I will save myself. After all, I am the one who discovered it.
Just three months into a global lockdown that shut down life as we knew it all around the world, everyone was changing, shifting, and adapting to a new existence. As a public relations professional who spent more than 20 years building a successful business in the travel and hospitality industry, I suddenly found myself going from a full roster of clients to virtually none, as the travel industry came to a screeching halt.
My workload continued to dwindle, so I decided to use this time to take care of some routine checkups and exams, including my mammogram. Luckily, I didn't have any trouble making appointments at this point during the pandemic, though I did have to go to them by myself. A few days after my mammogram, the imaging center requested that I return for a second mammogram on my right breast. I ended up doing additional mammograms on both breasts, and the doctor determined the extensive amount of calcification in my right breast needed to be biopsied. I was not nervous hearing the word biopsy, since I knew that additional screenings due to dense tissue and calcification were quite common.
Yet in the two weeks before my biopsy, I started to notice a small, pea-size lump in my left breast high up on the chest wall. I first noticed it when I was lying down on my right side on the couch as I watched a movie. It was more pronounced when I was in this position, but it was so small that sometimes I had to search to find it. To me, it felt more like a fixed bump than a moving lump, so I tried to dismiss the idea in my head that this could be something to worry about. But as each day passed, I found myself constantly looking for it, trying to see if it was growing (which it was not). I started getting an uneasy feeling about it and began sensing that something was not right.
At the end of June, I went for the biopsy of my right breast. The radiologist came into the room and was so warm and comforting. I liked her instantly; she had a robust and friendly demeanor. She explained in a rapid-fire manner that the stereotactic biopsy would take an hour and although the procedure was uncomfortable, it was not painful. I mentioned that I wanted to show her what I had discovered in my left breast. During the biopsy, we talked about the pandemic and my work in the travel industry and the hour went by rather quickly. When it was finished, I directed her to the lump in my left breast. She agreed that it was small but advised an immediate ultrasound.
During the ultrasound, she noticed something and decided to do a needle biopsy right then. She told me that the results of both biopsies would take a few days. Sore and bandaged, I went home, feeling a little uneasy and a little scared. Because of my family history of cancer, I was naturally feeling the worst.
I was 20 when my mother died of a rare sarcoma (a type of cancer that begins in bone or soft tissue) at the age of 52. I remember not accepting her diagnosis because I had a hard time understanding how someone so active, healthy, and spirited could get cancer. An avid golfer who played several times a week, my mother did aerobics, went on walks, took care of herself, and was so vibrant and full of life. She died within a year of her diagnosis on the Fourth of July.
Now, the day before the Independence Day holiday in the middle of the pandemic, it was my turn. I was sitting on my couch in my apartment just outside Denver when I saw a string of missed calls from my primary care physician. The doctor said he needed to speak to me before the holiday weekend. I finally reach him at 6 p.m. that evening.
"Katherine," he said, his voice somber but compassionate. "The biopsy tests came back. The tumor is malignant. You have breast cancer." I was the exact age my mother was when she was diagnosed and died.
At that moment, I felt the same way I did when I learned of my mother's cancer—an overwhelming wave of disbelief. My reaction was rather upbeat to the doctor as I asked him what they found in my right breast. He said, "The cancer is not in your right breast, it's in the left. It is invasive ductal carcinoma. We need to act quickly."
I was stunned. I hung up the phone and just sat there. My live-in boyfriend at the time looked at me and asked me who it was. I looked at him blankly and just said incredulously, "I have breast cancer." He did not say anything. I did not say anything. There was nothing to say. After all the additional screenings on my right breast, the cancer turned out to be in my left breast, the lump I had found myself while watching a movie. No screening had picked it up.
Cancer patients and survivors will tell you that your mindset completely changes from the very moment you hear your diagnosis. When I heard the C word, I initially thought to myself, game over. Eventually, that feeling would change to game changer and wake-up call. But in the early stages of my diagnosis, I looked at myself in the mirror, and instead of asking why, I asked myself, "Can I really do this?"
I am the youngest of three children. My brother is five years older and lives in northern California. My sister is 15 months older and lives in the suburbs outside Boston. When I got the diagnosis, I knew I had to tell them right away, but I could not bring myself to call either of them. I was paralyzed with the fear that hearing the concern in their voices would make my cancer all too real to me. So I decided to write my news in an email. I sent it to my brother first and waited a few days to send it to my sister. She was on vacation, and I did not want to ruin it.
My brother immediately set up a Zoom call with our cousin, who is a breast cancer surgeon in South Carolina. It was not until after this call that the fear set in and the reality and enormity of what I was facing became clearer. Each sibling lobbied for me to have the surgery near them, but since time was of essence, I decided to do the surgery near my home.
I was already exhausted, and it was just the beginning. The night before I got my diagnosis was the last night I would be able to sleep through the night. My anxieties awakened me constantly. Prior to the surgery, I had this fear that every second that went by, the cancer was spreading throughout my body. How could I have cancer and not feel sick at all? I could not help myself, but I started looking at the statistics on breast cancer.
According to the National Breast Cancer Foundation, invasive ductal carcinoma (IDC) is the most common type of breast cancer; it accounts for up to 80% of all breast cancer diagnoses. The average five-year survival rate for people diagnosed with non-metastatic invasive breast cancer is 90%, according to the American Cancer Society (ACS). One in 39 women will die from breast cancer, the ACS states. Would I be the one in 39? It was a helpless feeling, like I was just in a nightmare and eventually I would wake up and be fine. I was not fine at all.
The week after my diagnosis, I returned to the imaging center to have a full breast MRI. I saw the same radiologist, and she commended me for following my intuition and pointing out the lump in my left breast. Unfortunately, mammograms and screenings are not 100%. According to the American Cancer Society, approximately one in five breast cancers are not found by screening mammograms; things can and do get missed. That's why women need to know their bodies and advocate for themselves.
After the MRI, the radiologist quickly looked it over and noticed yet another suspicious mass in my left breast. She ultrasounded it and decided to do a needle biopsy—again, immediately. As I sat on a folding chair just outside the examination room, I remember trying to come across as positive and almost cheerful. The radiology team probably thought I was crazy, but it was almost like if I acted like I was optimistic, then the results would be favorable.
That would not be the case. A few days later, I learned that I had a second tumor, another invasive ductal carcinoma, in a totally separate quadrant of the left breast—which also went undetected by routine screenings. The reality hit me: Had I not found the initial cancerous lump on my own, there would have been no MRI on the left breast, and the second tumor would have gone undetected as well. With two tumors in different quadrants, I was no longer a candidate for a lumpectomy. Now, I was facing a single or bilateral mastectomy.
Almost seven weeks passed from the day of my diagnosis to the day of my surgery. Sleepless weeks became a whirlwind of doctor appointments, surgeon interviews, learning about my specific type of breast cancer, researching cancer terminology, and reading books and articles. There was also the pandemic to worry about—putting on masks, having my temperature taken at every appointment, worrying if I might have a greater risk of COVID now that I had cancer and would soon be treated for it.
Navigating my cancer became my new full-time job during summer 2020. There were so many questions to ask and countless decisions to make. Should I do a single or bilateral mastectomy? Should I get implants or remain flat? Will I need chemotherapy or radiation What is the recovery time for a single versus bilateral? My list of questions went on and on. If not for my cancer surgeon cousin, I might not have known what questions to ask the doctors or the meaning of so much complex terminology.
I finally made the decision to do a bilateral mastectomy with immediate reconstruction with implants. Even with nothing suspicious detected in the right breast, I had two tumors in my left breast, so my intuition told me that I should remove both breasts. I did not want to just remove the left side and months later find out that I had a cancer in my right and have to remove that as well.
It was a lonely and sobering feeling when I came to the decision to do the bilateral mastectomy. Knowing that a big part of your body was going to be cut out, the part that women identify as feminine, was difficult to grasp. I had to trust my instincts. This was the first time I was facing major surgery, and I knew it would be a long recovery. The surgery lasted six hours.
A week later, the surgeon called me to say that they found ductal carcinoma in situ (DCIS) in both breasts as well. The early-stage cancer was not detected in the mammograms and biopsies. I was shocked and relieved that I had made the decision to have both breasts removed.
On August 21, I was officially diagnosed with Stage 1A estrogen-positive invasive ductal carcinoma and DCIS cancer. Luckily, there was no evidence of cancer in my lymph nodes, so chemotherapy and radiation were not recommended. For the next five to 10 years, I will take tamoxifen and closely monitor my side effects, as well as have my bloodwork checked.
This cancer scare and diagnosis put my mind and body in a state of overdrive. I became hypersensitive to self-preservation and protection. I realized that just like my mother, it can happen to anyone, suddenly, and with no warning. No one knows your own body like you do, so you have to trust your gut, follow your intuition, advocate for yourself and your body, and above all, do breast self-tests. Going through this in midst of the pandemic, when everyone felt lonelier and more afraid than ever, gave me the confidence to trust myself and make the decisions for me.
Although fear plagued me at times and still does to this day, I knew that I could get through anything with the support of my family, friends, and the fearless breast cancer patients and survivors I have met along the way. But as I began to chart an uncertain path through my diagnosis and post-surgery recovery, I realized that the only person that could protect me and actually heal me would ultimately be myself.
Doctors tell me that a cancer diagnosis is traumatic, and many patients have the effects of PTSD with the illness. I turned out to be one of them. I no longer felt "safe" in my own body throughout the diagnosis, surgery, treatment, and recovery. After trying everything under the sun from melatonin to meditation to yoga to address my insomnia, my oncologist recommended that I speak to an oncology social worker who specifically worked with cancer patients. While most people can turn their minds off in order to sleep, my mind was operating at a very heightened level at night.
Just like people who have experienced traumatic events or veterans returning from combat, cancer patients can experience similar symptoms of PTSD. That's because the diagnosis of the illness is a trauma—one that is almost violently disruptive, sudden, and life changing. The social worker described the diagnosis of a life-threatening illness as a "saber-tooth tiger" that was looming in the room. It attacked me with the first diagnosis, but the fear or worry that the cancer will return or progress in the same organ or in another part of the body is one of the symptoms of PTSD, and that is what keeps me up at night.
Nearly one in four women newly diagnosed with breast cancer experienced PTSD. While the symptoms vary for patients, they can surface at the onset of diagnosis to months or even years later. It is critical for patients to recognize the symptoms, address them, and acknowledge that they are not alone. I found that spending time with family and friends, getting out in nature and exercising, and connecting with other breast cancer patients are tools that really helped me address the trauma and recognize that cancer is more than one stressful event—it is a series of events with many unknowns—some that I have no control over. I had to learn to trust myself during the cancer diagnosis, which a year later has helped open me up to trusting myself in other aspects of my life, too.
Just four months after my surgery while I was recovering, I followed my gut once again and ended my eight-year live-in relationship with my boyfriend at the time, who I have known since I was 16 years old. All the pamphlets and brochures in doctors' offices do not tell you that 50% of relationships will end after a breast cancer diagnosis, according to some sources. Mine would not survive just five months after the diagnosis, but I can honestly admit that I am not surprised. So in just under one year during a global pandemic, I have been diagnosed with breast cancer, had a bilateral mastectomy with reconstruction, and I am now single and on my own.
Though all of these events have been indescribably difficult, I have discovered a new sense of freedom as well. I remember waking up after surgery in my hospital room, and I had an incredible view of the Rocky Mountains just outside of Denver. In the midst of a haze of Percocet and other painkillers, I looked out of my window and already wondered if and when I would be able to get back out there and enjoy the outdoors like I used to. It was a positive sign. I was alive.
I would never have imagined that nine months later, I would be running the rugged trails at Las Catalinas, an outdoor enthusiast's dream in Guanacaste, Costa Rica. But I did it. I was last at Las Catalinas in 2017, so I knew that this would be the perfect place to continue to heal and connect with nature. I ran and hiked the trails, listened to the ocean waves hitting the shore, strengthened my upper body with classes at CORE by CHAKfitness, paddle boarded in the Pacific Ocean, and ate nutritious and healthy food. This not only enhanced my physical well-being but did wonders to my mental state of mind after the trauma of my cancer diagnosis, surgery, and recovery.
It is strange, but throughout this whole experience, everyone keeps saying "you're so strong and brave." Most of the time, though, I felt neither strong nor brave. From the moment I got my diagnosis, there were decisions to be made, but the primary focus was to stay the course and most of all, to live. I trusted my instincts about my one and only body, and that is truly an empowering feeling. The cancer and the end of my relationship during the pandemic has undeniably changed me, but neither trauma has broken me. A profound sadness follows me every day, but with trauma I have found hope and with loss I have found acceptance.
I do not know what the future holds, and it is impossible to know if the cancer will spread or come back, but as long as I have my intuition and as long as I trust it, I can face whatever comes next. I will make it to the surface of the frozen pond. This time, I pulled myself through the hole.
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