When I went to the hospital last year for my annual mammogram, I expected to be in and out in 60 minutes. Being a healthy female in my mid-40s with no symptoms or major risk factors, I knew my chances of breast cancer were low. So I was more annoyed than worried when the radiologist also wanted to perform an ultrasound.
As a single mom of three boys and a doctor with a busy breast radiation oncology practice, that day was a typical manic workday with every hour booked solid. I was more worried about falling behind in my schedule than what was going on in my breast. But I stayed because the radiologist was able to get me in quickly for the additional procedure. When he returned with the results, I knew something was wrong.
“You have at least five suspicious masses in the right breast and an abnormal looking lymph node,” he said.
I didn’t hear the rest of what he told me as I was concentrating on trying to stay calm. Having counseled thousands of patients through their breast cancer diagnosis, I was fully aware of how nondiscriminatory this disease could be. But I always thought if I was ever diagnosed, it would be caught early because I underwent routine mammograms. I never expected to have high volume, lymph-node-positive disease.
Biopsies of the two biggest masses and the lymph node confirmed breast cancer. I proceeded to undergo bilateral mastectomies and implant reconstruction. I elected to have the uninvolved breast removed for prophylactic reasons. When I awoke from surgery, I thought the worst was over. Preoperative testing showed that I didn’t need chemotherapy or radiation. I would have to take endocrine therapy to block estrogen production for a minimum of five years, but that was just a daily pill and a shot every few months.
When final pathology came back, it revealed more extensive disease than initially anticipated. As a result, my medical oncologist, who was a close friend, added chemotherapy and CDK 4/6 inhibitors to my treatment plan and told me to get my ovaries removed. I knew that radiation would be required after taking a quick glance at my chart. Knowledge is power, but it can also be terrifying. In that one moment, I imagined myself developing every major chemotherapy and radiation complication that my patients have experienced. I was overwhelmed and devastated.
I sought a second opinion at Dana-Farber Cancer Institute. I knew my friend made appropriate recommendations, but I was in such denial that I had to hear it from a neutral third party. As expected, the doctor agreed with the plan. He then informed me that my chances of 10-year disease-free survival was 85%.
Only85%? I thought to myself. Four weeks earlier, I was a healthy 46-year-old who never thought twice about whether I’d live long enough to see my children start their own families. Now, I’m learning that, even with all the treatment, I have a 15% chance of developing metastatic disease — meaning I could die. I was in shock.
“Eighty-five percent is a good number,” he reassured me.
But it isn’t good enough for me as I thought of my three sons. I have too much to live for. I want to be as close to 100% as possible.
I suddenly empathized with early-stage cancer patients who seek treatment despite being counseled that their disease is extremely low risk and does not require aggressive intervention. While I did not have low-risk disease, I can now relate to that desire to exhaust all options to get the best possible outcome because cancer is scary. Early-stage disease does not discount the trauma of being diagnosed with cancer.
The insensitivity of past comments I’ve made to patients became glaringly clear. I would often tell women with low-risk breast cancer that their disease likely won’t kill them, and that if they didn’t do radiation at this time, they could do it in the future if the cancer came back because it would presumably be caught early with routine imaging. The last phrase stuck with me the most because I was doing routine imaging and my cancer was not caught early. I know I’m in the minority, but I’ve treated plenty of women in the minority over the years. And being in the minority sucks. So I now understand the motivation to be over-treated and leave nothing to chance, despite what a physician may recommend.
I bolted back to work two weeks after my mastectomies. Many people thought it was too soon, but going back to the office gave me a sense of control during a time when I felt helpless. As a physician, I encourage patients to return to their routines as quickly as possible to regain normalcy and get their minds off the diagnosis. I appreciated getting back into my routine, but I had a bit of a mental struggle because all day was spent talking to women about their breast cancer and all night was spent thinking about my own.
When I started chemotherapy, I took the first two days after each cycle off but otherwise continued on with my life. The premedications were effective for managing nausea and bone pains, but there was nothing to treat the fatigue, which was debilitating. During this time, my only priorities were to go to work and be there for my kids. I rarely went out socially, ordered way too much from Uber Eats and wasn’t upset if my kids got a bad grade. Piles of unfolded laundry and dirty dishes in the sink no longer bothered me. Cancer forced me to prioritize myself for once, and things that seemed important precancer just fell to the wayside.
One thing that never lost importance for me was my hair. As someone who was always known for having an amazing head of hair, I struggled greatly with my hair loss. The temporary loss of my hair impacted my self-esteem more than the permanent loss of my breasts. As a physician, I found it odd when a patient refused the recommended chemotherapy because of her hair. Sometimes, an older regimen that didn’t cause hair loss would be prescribed, but it was also less effective. Other times, patients would flat out refuse chemotherapy to avoid losing their hair.
I used to pass judgment on these patients for not being able to prioritize their lives over their vanity. However, as clumps of my own hair fell out, I learned just how much of my identity and self-worth were tied to my hair. I was still treated the same by those around me, but I didn’t feel like myself. As a physician, I encouraged patients to shave their head to regain control. As a patient, I could never bring myself to actually do it. Despite looking ridiculous with a huge bald spot, I found comfort in preserving the hair that remained on my head, as it represented the person I was precancer — a person I was unsure I would ever find again. So, the next time a patient asks for my opinion on the matter, I will give them my recommendation, but also tell them to do what feels right.
Losing my estrogen was the only thing that trumped losing my hair. The hormone made me feel like a woman and is a potent anti-inflammatory that protects many organs, like the heart and brain, as well as bones. Chemotherapy commonly shuts down the ovaries, which are the major source of estrogen in the female body. While every woman will lose ovarian function (also known as menopause) as they age, it is a gradual transition that takes years. I, on the other hand, felt like I woke up one day with menopause in full swing and experienced a sudden onset of symptoms that included sleep disturbances, mood swings, fatigue, weight gain, joint pains and a loss of libido. About 80% of breast cancers feed off estrogen; therefore, suppression of this hormone is routinely recommended for treatment. The associated symptoms that come with losing the hormone are accepted as the price of treating cancer.
Hot flashes and weight gain are the biggest issues patients complain about to me. I recommend supplements and prescription medications for the hot flashes, and more exercise and calorie restriction for weight gain. When patients tell me they’re already doing the latter without any results, I used to think sure you are and tell them to try harder. As a patient, hot flashes and weight gain were also my biggest issues. The hot flashes were thankfully managed effectively with medications. The weight gain, on the other hand, was not so easily fixed.
At 5 feet, 8 inches, I’ve always had a slender, athletic build that was maintained through diet and exercise. During chemotherapy, fatigue killed my motivation to exercise but I also had little appetite. I was shocked when I ended chemotherapy 10 pounds heavier. I followed the recommendation I previously gave patients, but noticed zero difference in my weight after several weeks. I now understood my patients’ frustrations and felt extremely guilty for faulting them when they didn’t see results.
When I went to medical school in the early 2000s, there wasn’t much guidance on how to manage menopause symptoms. Women were just supposed to suck it up. My experience prompted me to research alternative ways to keep my estrogen-less body healthy, strong and sane. Eating more protein, more fiber, and more whole foods is key to fueling this new state. Added sugars and ultra-processed foods need to be avoided or completely eliminated. Regular exercise, specifically resistance training, is also crucial to preventing muscle wasting and bone loss and improving mental clarity. Together, these dietary and exercise changes are effective ways to offset many of the symptoms associated with estrogen deprivation.
I began radiation four weeks after the completion of chemotherapy. Treatment was delivered daily Monday through Friday for 16 days. My world felt inverted when I became a patient in my own clinic, receiving treatment by my own staff with my appointment time dictated by whenever I had an opening in my work schedule. To say the entire experience was surreal would be an understatement. Once completed, I had my uterus and ovaries removed and then initiated the maintenance treatment, which consisted of pills that I would take for the next several years of my life.
The past six months of my life have been a blur. I was treading water every day trying to get through treatment while caring for my patients and staying present for my children. I intended to keep my diagnosis private, but when my hair fell out and I spent most of my nonworking hours in bed, it was obvious something was wrong. So I decided to share my journey with others.
It was initially uncomfortable talking about something so personal because I’m a private person who takes pride in being strong and independent. But telling others about my struggles and vulnerabilities helped me come to terms with my diagnosis, process the changes that were happening and vent my frustrations and fears. In return, friends and colleagues confided in me about their own personal health struggles of which I knew nothing. I also found a greater connection with my patients, who put even more trust in me as their physician because I now know firsthand what they are going through.
I spent the past 15 years of my life as a practicing radiation oncologist and considered myself a cancer expert — but there was only so much I could know as a spectator. By being on the arena floor and fighting this terrible disease as a patient, I have become a more effective doctor who does not lose focus of the patients’ humanity while treating their disease. Undergoing treatment for breast cancer has been a life-changing experience, but I have emerged stronger and more resilient and have found a renewed purpose and meaning in my chosen profession through my diagnosis.
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Catherine Sue Hwang is the section leader of Breast Radiation Oncology at the AdventHealth Cancer Institute in Orlando, Florida, and an associate professor in Clinical Radiation Oncology at the University of Central Florida College of Medicine. After hours, she can typically be found at a baseball field, supporting her three sons from the stands. She also enjoys spending her downtime on the tennis court or in the company of her family, friends and dogs. She has been documenting her breast cancer journey and increasing awareness of the disease on her Instagram page @breast_cancer_360.
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