by SoundAffects - March 3, 2019

Taking Charge

A doctor overcame the medical establishment’s assumption that young women do not get breast cancer, and worked for years to obtain a proper diagnosis and treatment. Today, she is an advocate for women facing similar challenges.

When I was finally diagnosed with breast cancer last year, the disease had already been on my mind for nearly two decades. Back in college, I had heard a speech by a young woman named Katrina Lewis, who was living with Stage IV metastatic breast cancer. She had found a lump in her breast years before she was officially diagnosed, but her concerns were repeatedly dismissed by health care providers who believed that she was too young to have breast cancer – a frustration faced by many young women I have since encountered.

Despite advances in medical science, the growing prevalence of breast cancer, increasing understanding of the risks, and the ability to test for a genetic predisposition, many young women are still denied diagnostic and genetic testing for this disease. Katrina would eventually succumb to her illness, but I will be forever grateful for her efforts to educate young women about their risk of breast cancer, the need for breast self-awareness and her encouragement to perform breast self-examinations.

I am now a 38-year-old mother, board certified internist, pediatrician and infectious disease physician, speaker, author and coach. Recently, I have added breast cancer survivor to the list of my accomplishments. I was diagnosed with Stage 3a Invasive Lobular Carcinoma of the right breast in last April. My diagnosis was far from typical and my doctors’ search for my breast cancer began over two years prior to my diagnosis. It was a process that could have been expedited, possibly leading to less need for enervating chemo and radiation, if my doctors had considered my family history and given me a genetic test earlier on.

Katrina’s story had prompted me to immediately begin performing monthly breast exams while still in school, and I found a lump in my left breast within the following year. I set off in hot pursuit of answers, but these were hard to find as an uninsured 21-year-old graduate bound for medical school. I was navigating a transition from college in Tennessee to medical school in New York City. In between, I would spend six weeks helping care for my grandfather, who was dying from inadequately treated metastatic prostate cancer. I was fearful that my lump might result in the same fate, but just like Katrina, I was repeatedly dismissed as being too young to have breast cancer.

The pebble I found in the lower quadrant of my left breast quickly grew into a pea, a marble and then a painful amorphous blob that, by the time it was removed a year later, was over 5 cm in size. It took several months from the time I found it to be diagnosed via ultrasound with a fibroadenoma, which was confirmed when it was removed a year later. To me, it was a sign of things to come, though my doctors dismissed it as a fluke in a woman in her early 20’s.

I would remain symptom free for almost a decade and a half, but I continued to examine my breasts regularly. I found another lump in my left breast when I was 35 that prompted me to get a mammogram and breast ultrasound. I was given a brief and false sense of relief when the preliminary report indicated that the mass appeared to be a fibroadenoma. Days later, my primary care doctor would sit me down in her office and inform me of the Breast Imaging Reporting and Data System results. The findings could not conclusively rule out cancer, and were concerning enough to warrant an immediate biopsy.

The results showed LCIS, a precancerous change that led my breast surgeon to perform a lumpectomy. They found three types of abnormal cells that indicated that I was at high risk for breast cancer. This led to two years of preventive therapy with Tamoxifen and quarterly breast cancer screenings, alternating mammograms with ultrasounds and breast MRIs. Over this time, I had multiple biopsies and lumpectomies, living with the fear that a biopsy would reveal cancer.

I became so used to the exam, image, biopsy, wait routine that when I first got called back to discuss abnormal MRI results, I figured that they’d just found more of the same precancerous cells. But when I went for a MRI guided biopsy, I knew that the outcome would be different: I could see my cancer on the screen across the room. It was staring me right in the face. This was a mass, a tumor, not the vague schmutz that could only be picked up by the trained eye. Anyone could see this, yet it had evaded the detection of the mammogram and breast ultrasounds, something that I now know happens with 15 to 20 percent of all breast cancers. After the agonizing procedure, I waited 5 days for the call. I knew what was coming, but all the while I hoped in vain that I was wrong, that it was something other than breast cancer.

My treatment consisted of bilateral mastectomies with immediate reconstruction and placement of tissue expanders, chemotherapy with four cycles of AC (Adriamycin and Cyclophosphamide) and four cycles of ddT (dose dense Taxol) with Carboplatin. My course of chemo was extended because my white blood cell count was at times too low to safely receive a dose. In the beginning I would cry because I thought the delay put me at risk of losing hold of the cancer that had invaded my body. I also wanted to hurry up and get done with treatment, rid my body of this awful disease and get on with my life.

Fortunately, I learned to make lemonade from these lemons and would add in an extra day or two of patient care when I was able to work, enjoy a day at the beach with my daughter and family, or celebrate a day with no chemo and no side effects over a large meal with my bestie. After completing chemotherapy on last September, I began 25 doses of radiation therapy, which I completed in November. I am now on hormone suppression therapy with Zoladex and Letrozole.

I did not have what the medical community considers “a strong family history” of breast cancer. My maternal grandmother had colon cancer, a third cousin on my mother’s side had breast cancer in her 50’s, and perhaps another great aunt on that side did as well. My father and paternal grandfather both had prostate cancer and had vastly different outcomes due to screening and early detection, which spared my father chemo and radiation.

I think that prophylactic surgery and genetic testing would have done the same for me. It would have also saved my insurance companies thousands of dollars by eliminating the cost of my chemo, radiation and treatment of the complications from my axillary dissection (lymphedema). All that to save a few hundred bucks on a genetic test. The family history of prostate cancer had not been taken into consideration when I requested genetic testing and a prophylactic bilateral mastectomy – something I am glad to see many young women taking advantage of today as they take charge of their long term health and avoid my fate.

I now know that the idea of someone’s family history of breast cancer not being “strong enough” is a fallacy and that my paternal family history of prostate cancer put me at much greater risk. So low and behold, when I was diagnosed with breast cancer at 37, I suddenly became a candidate for a prophylactic mastectomy on the left and a modified radical mastectomy on the right, and, oh yes, that genetic testing I’d requested a year earlier. Turns out I am a mutant! I have the PAL B2 gene mutation that elevates my risk for early breast cancer and increased risk of bilateral breast cancer. This was diagnosed when a 1.5 cm area of cancer, not previously detected, was found on the left side.

Breast cancer treatment was brutal and I am still trying to wrap my head around the fact that I survived it. Living in a constant state of fatigue and dealing with long-term side effects like chemo brain when I practice a subspecialty of medicine that is purely cognitive, and dealing with the side effects of low white blood cell counts when I treat a population of patients who are often infected with highly pathogenic organisms, sidelined my career very early in my treatment. Losing my hair was to be expected and the peripheral neuropathy has been challenging but manageable. Their nuisance paled in comparison to the possibility of allowing my cancer to progress to metastatic disease, so I consider them fair and reasonable but unfortunate casualties of the war. These days I am feeling more energetic and my cognition is improving. I look forward to returning to work in the coming weeks or months.

Having breast cancer has been a humbling reminder of my limitations, as well as my own strength and resilience. It has taught me that I cannot control everything and that it is okay to allow others to see and experience my humanity – something a career in medicine does not allow you to do. These days, taking care of myself includes careful consideration of what I put into my body. At home I follow a strict plant-based diet but also enjoy a nice fish fillet or tuna steak or an occasional seafood dish at a restaurant during a celebration. I look forward to having the strength and energy to resume my prior aerobic exercise routine as it is part of a cancer fighting lifestyle. This also includes meditation, yoga and healing work in the form of life coaching, practicing gratitude and, of course, prayer. Getting adequate sleep, drinking plenty of water and spending time outdoors has also been a necessary part of my healing and will continue to be a part of my wellness practice.

Lastly, cultivating joy has been crucial. Part of that means allowing myself to experience a full range of emotions, so that I can experience happiness, joy and laughter (no trouble there) as fully as I possibly can, rather than have them suppressed by dulled negative emotions. The rite of passage during my treatment also involves writing books, speaking and blogging to share my story and find ways to help and serve women, mothers and the cancer community.

I have shared my journey with breast cancer via social media on Instagram, Facebook and Twitter, and I have a private Facebook group called Breast Cancer Beautiful, which I started after having some difficulty connecting with other women with the disease early in my diagnosis. The group is for women with a diagnosis of breast and/or ovarian cancer or those who are known to be at risk for these conditions due to family history or genetic predisposition. Over the course of my treatment, I shared my journey in “As the Wind Blows, Volume 2” which was coauthored with six other women who have overcome extraordinary circumstances.

I would encourage any woman diagnosed with breast cancer, regardless of the stage or the prognosis, to live the most extraordinary life they can moving forward. Do not give in to this disease. Show up as your best self in any and every way that you can. Live and walk in your purpose, be brave, be strong and be Breast Cancer Beautiful!

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