From LCIS to Invasive Ductal Breast Cancer
Hurricanes are commonplace in North Carolina, but the greatest ones, like Fran, Floyd, and Florence, can never be forgotten. Life crises, like hurricanes, can be varying strengths, but those with greatest magnitudes leave lasting scars. My life’s greatest hurricane made landfall on May 18, 2020 in the middle of COVID-19, when a radiologist called to notify me that I had Invasive Ductal Cancer, the worst moment of my life. The feeling of sheer terror and desperation is forever locked in my mind. However, like a hurricane that begins brewing out at sea weeks before, my breast cancer journey actually began on 9/11 with my first breast cancer scare, a lumpectomy which turned out to be fibrocystic, followed by a more serious scare in 2014.
In 2014, I was a married forty-seven-year-old mother of two who considered herself in excellent health when one evening I started having spontaneous breast discharge, some of it clear but other times cloudy and a little bloody. I was completely panic-stricken and asked my husband, a reporter, who was out-of-town on assignment, to come home immediately. The days that followed were filled with an ultrasound, a needle biopsy, and a lumpectomy to diagnose LCIS (Lobular Carcinoma In Situ), abnormal cells in the milk duct. Not to be confused with DCIS, Ductal Carcinoma In Situ (Stage 0 noninvasive cancer inside the milk duct), LCIS is abnormal cells that are a marker that breast cancer could develop, and doctors say women only discover LCIS by chance. Having witnessed my sister-in-law’s battle with breast cancer and eventual death seventeen years earlier, I was certain I did not want a similar journey and asked about a double mastectomy. One of my early surgeons explained to me that doctors didn’t cut off a body part just because cancer may or may not happen one day and that LCIS only meant a chance of cancer not a likelihood. She suggested that my insurance may not even cover a mastectomy without a cancer diagnosis and assured me that breast cancer had come a long way since my sister-in-law’s experience; monitoring a condition like LCIS was the protocol today.
Indeed, research supported her analysis. According to two twenty-year longitudinal studies following thousands of women with LCIS published in the National Library of Medicine, my chances of developing breast cancer were around 11% the first six years, rising to 15% – 17% at ten years; at worst, I had an 85% chance of not developing it. By the way, only 5% of women in these studies underwent a preventative mastectomy at the onset of diagnosis.
I tried to find peace living with LCIS. I compared my diagnosis to that of a child of a diabetic since the child’s chances of diabetes are increased but certainly not definite. Ironically, labs from an annual physical showed my Prolactin levels were elevated, which seemed to be a mystery to my breast care surgeon and the endocrinologist I started seeing. I was told it could be my anti-depressant or it could be hormones elevating the Prolactin; no one seemed to know. I will always suspect it was somehow related to the LCIS although doctors could not confirm it.
Just when I thought the storm had passed, a second wave blew through in 2016 with yet another suspicious mammogram that led to yet another biopsy followed by another lumpectomy in the same breast as the last one. Because I am one of the fortunate ones who has health insurance, I began seeing a high-risk breast care specialist at Duke Medical Center. On our first meeting I expressed my fear of developing cancer and my wishes for a double mastectomy if that day ever came. My surgeon agreed to my wishes but also agreed with others before her that LCIS did not mean that day would ever come; I was simply at a slightly higher risk. To reassure me she ordered the BRCA breast cancer gene test, which determined that I did not carry the gene, and she suggested that Tamoxifen may lower my chances of ever developing cancer. She claimed studies showed a chemoprevention drug lowered the risk to 7.5%. In hindsight, I regret not trying Tamoxifen but having read negative experiences, including its potential to increase chances of depression which I was already prone to, I hesitated about taking Tamoxifen since it would not eliminate LCIS but possibly lower the chance. I struggle with this regret today, but, as my minister has since advised me, regret does not help healing, so I am learning to let it go.
A few weeks before my storm finally made landfall on May 18, 2020, I almost rescheduled the annual mammogram due to fears of getting COVID; now I am grateful that I did not. After the mammogram showed a suspicious area, I had my third biopsy and was advised that it appeared to be DCIS, which is not invasive cancer, so when the radiologist notifying me said it was Invasive Ductal Cancer, I was in disbelief and had to ask the doctor to repeat the diagnosis a few times. After the call I fell to the floor crying. Like so many years earlier, I called my husband who quickly left work to be at my side. I was in complete shock at the news, and my body started shivering for warmth on that hot May afternoon. I have since read upon hearing her diagnosis actress Julia Louis-Dreyfus said she was “to-my-bones terrified,” which sounds pretty accurate to me.
Like hurricanes, just because the eye has passed, the danger is far from over. Storms with great wind gusts go on for hours before the storm is safe enough for homeowners to survey the damage. The days following a cancer diagnosis are like homeowners waiting to survey the damage; they know it is bad and sometimes the agony of waiting to see the damage is the worst part of it. Since reconstruction would be the second part of my surgery, my plastic surgeon and my breast care surgeon had to coordinate schedules, which was tricky so there was a bit of pleading, or nagging to be more accurate, on my part; I could barely eat or sleep from worrying about the cancer’s spread. Between May 18 and June 2 we had constant virtual and in-person appointments to prepare for surgery. Extensive lab results confirmed that I was Triple Positive, meaning I am estrogen receptor positive, progesterone receptor positive, and HER2 positive. The oncologist giving me the news that I would need chemotherapy must have seen my tears but his face never betrayed it. Since cancer made me at a much higher risk for developing COVID, I was petrified I would develop it, causing the surgery to be postponed, so our family was particularly paranoid, and I stopped leaving the house completely except for doctor’s appointments. My kids had to drastically limit exposure to others, and my husband took off all work clothes and washed carefully before greeting me at the end of his day. Two days before surgery, my COVID test showed I was negative, and I was relieved to get the greenlight for surgery.
Because of COVID, my husband was unable to see me once he dropped me off for surgery, and he was not allowed to visit me afterwards. In addition, doctors would call rather than meet with him for an update after surgery. COVID made the experience so impersonal, and he couldn’t stand my going through such a major surgery alone. Hoping to reassure my family, I left them all notes to find during my surgery reminding them that I was not afraid and that I was relieved to get the double mastectomy behind me. However, I was anxious, so when I received a card from a relative the night before reminding me to take comfort in knowing that God was hearing my name several times a day as she and others were praying for me, I carried that thought with me to feel less along in the hospital.
The week of surgery would prove to be the worst week of all for our family. As if having cancer during a pandemic was not stressful enough, our beloved family dog of fourteen years, Atticus, became ill and passed away two days after surgery. I had four drains coming out of my sides and was in a great deal of pain when my family helped me walk into the vet to say good-bye; the accumulation of emotions felt almost more than I could bear. Throughout my diagnosis he had been such a comfort, snuggling with me and always watching over me with his big dark eyes as if he understood my immense sadness. A day later lab results revealed cancer in one of the two lymph nodes removed during surgery. Furthermore, I had ENE, an extra nodule extension, meaning it had broken out of the lymph node and into the surrounding tissue, in addition to LVI, lymphatic vascular invasion; all this meant the chemo would now be strong, four drugs, TCHP (Taxotere, Carboplatin, Herceptin, Perjeta) and radiation would also follow. Strangely enough, there was no cancer in the left breast, and I had just remarked a week before surgery at how peculiar that I had gotten four mosquito bites on the left side of my body but none on the right. It was an incredibly hard week, and my aunt shared a Persian proverb with me that when a pet dies in a home where someone is sick, it is believed that the pet has taken the illness from the house.
In the weeks that followed I began mulling through my storm’s destruction and started the cleanup. My oncologist ordered bone and body scans to see if the cancer had spread. Waiting for results was agonizing. My mother came to console me. No matter how old you are, there’s no comfort like having your mother hold you in a crisis. My sister, who carries on a perfectly normal life despite being diagnosed with inoperable brain cancer eleven years earlier, reminded me each day that faith is crucial to healing. When I got results, I was incredibly relieved to hear that the scans were clear; now there was good reason to think that we had gotten the cancer and that the chemo and radiation would address any that escaped through the lymph node. The chemotherapy drugs plus a year of Herceptin create an excellent prognosis; studies show no recurrence in approximately 94% patients undergoing the regimen. Still, it would be a long journey ahead. To gain strength I asked family and friends to pray for me and with me, and I honestly could not have made it through this journey without prayer warriors in my life. Friends sent me care packages, daily devotionals, and messages that they were praying for me. Some set up a meal train to bring dinner during my upcoming chemotherapy, and others sent our family gift cards to restaurants. As a daily reminder I created an image board, filling it with my favorite scriptures from Philippians, Isaiah, Jeremiah, and Psalm. I added pictures of dreams I have to see my children graduate, marry, and have children of their own. I started a list of everyone I’d ever known who survived breast cancer and added the name of every new survivor I met along the way. Then I lined the outside of my pantry door with every card I received to reread in my darkest hours.
Photos: (1). My daughter emptying and measuring my drains 3 x a day for 14 days (2). My mom, a kidney cancer survivor and my sister, diagnosed with an inoperable brain cancer twelve years earlier (3). I turned the pantry door into a visual board of with dreams, verses, and cards
Sometimes as a storm dies down there is a blessing, a rainbow. Along my journey survivors have told me to watch for the blessings that would come from my experience. I have only completed step one of my journey: double mastectomy. I still have a long road ahead with chemotherapy, radiation, and reconstruction; however, I am already finding blessings. First, I am more grateful than I have ever been. As terrible as cancer is, I know there are worse things out there, like losing a loved one. I would rather go through cancer ten times over than to lose a loved one, especially a child. Five days after surgery I was able to cover my mastectomy drains and walk into the school to see my daughter accept her diploma. Having missed her senior year due to COVID-19, I was grateful to be able to share that experience with my family.
There have been other blessings as well. Early into my diagnosis, I awoke in the middle of the night with a feeling of immense peace and felt a voice telling me that I now had a new purpose. I had just remarked at the dinner table the day before that my husband and I would need activities when we become empty nesters and especially when we retire one day, and I didn’t know whether we would be helping at voting booths or getting involved in charities we felt passionately about, but we would give back somehow. I now know one purpose will be being active in the fight against breast cancer.
Another blessing is how deeply I love now. I love my husband for holding my hand so I can get to sleep each night, my children for helping me stay strong, my family and dear friends for supporting me through calls and frequent texts, and for my wonderful prayer warriors, some I have known since childhood and others I have just met, who ask God to heal me.
I have been initiated into a sisterhood that no one wants to join but one that creates an inseparable bond all the same. I am incredibly blessed to have a group of fellow breast cancer survivors who support me through this journey. It feels like we have known each other our whole lives because no question is off limits; being able to share the intimate details of what cancer destroys in its path with someone who has weathered the storm empowers me and helps heal the soul.
It is easy to have friends on our sunniest days, but to have loved ones go through the rain with me is truly humbling. I have Jeremiah 29:11 taped to my desk. It reads, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” It reminds me to be grateful for each day and to look forward to the chance to hold someone else’s hand through the storm.
Coopey, Suzanne B et al. “The Role of Chemoprevention in Modifying the Risk of Breast Cancer in Women with Atypical Breast Lesions.” Breast Cancer Research and Treatment vol. 136,3 (2012): 627-33. doi:10.1007/s10549-012-2318-8 https://pubmed.ncbi.nlm.nih.gov/23117858/
King, Tari A et al. “Lobular Carcinoma in Situ: A 29-Year Longitudinal Experience Evaluating Clinicopathologic Features and Breast Cancer Risk.” Journal of Clinical Oncology : Official Journal of the American Society of Clinical Oncology vol. 33,33 (2015): 3945-52. jjjjjdoi:10.1200/JCO.2015.61.4743 https://pubmed.ncbi.nlm.nih.gov/26371145/