As I sat with my morning coffee, anxiously awaiting the call that would change my life forever, I tried to talk myself out of the inevitable. I tried unsuccessfully to tell myself that the news on the other end of the line would reassure me that all was well, and the suspicious lump that looked very much like cancer on the ultrasound screen was, in fact, nothing to be concerned about.
There is nothing that can ever truly prepare you to hear the words “You have cancer.” In that moment, those words did not shock me, nor did the feelings of utter despair and panic that accompanied them. Somehow, my intuition knew the spoken words before they were uttered. What followed were more words that helped ease the discomfort and perhaps gave a glimmer of hope. “You caught it early.” “This is not a death sentence.” “You have the best team of doctors, and you’re in the best hands.” Those words were reassuring and helped me see life on the other side of this. All I wanted in that moment was to know that I was in the right place with the right doctors, and that I would survive. I’ll take the long road of treatment, fear, and uncertainty ahead of me. Please, just let me live!
The next 2 weeks were a blur of appointments with an oncologist, a surgeon, a radiation oncologist, a nurse navigator, a genetics counselor, nurse practitioners, and a therapist. These were booked alongside more appointments for a breast MRI, bone scan, and chest and abdomen CTs, before the chemotherapy could even start. Two weeks of a now-known aggressor growing inside of me when all I wanted to do was start treatment and knock it down ASAP. In my 49th year of life, 1 month shy of my 50th birthday, I was diagnosed with stage II triple-negative breast cancer.
There are different kinds of breast cancer, some easier to treat than others. Triple-negative is less common and highly aggressive.
Even though we’ve all heard of breast cancer, most of us don’t know what it really means. Education begins immediately with such a diagnosis! Lesson #1: there are different kinds of breast cancer, some easier to treat than others. Triple-negative is a less common and highly aggressive grade 3 type of breast cancer that often affects younger women or African American women. It accounts for 15% to 20% of all breast cancers. TNBC lacks the hormone markers present in the other 80% of breast cancers. It tends to grow faster and metastasize quicker. But triple-negative tumors are not created equal, and women who share the same stage and diagnosis, can have completely biologically different cancers, with different treatment results and prognoses. I didn’t know any of this, because no one from my team of the best doctors took the time to explain it to me.
I was told the course of treatment was the same for everyone with TNBC. Neoadjuvant chemotherapy (before surgery) of ACT: Adriamycin, aka the red devil, Cytoxan, and Taxol. I didn’t question this. I trusted that my oncologist knew what was best for me and was giving me the best chance to beat this disease.
I wondered early on if I should ask for a second opinion and seek a different facility for treatment. Fear was constantly coursing through my veins, and I needed to start treatment as soon as possible. Every day felt like a ticking time bomb. I just didn’t think I had the time to wait for more appointments and answers. I also really liked my oncologist. She was always reassuring and helped me feel at ease. I looked forward to the weeks when I would see her first, before heading to the chemo chair. I believed in her, and I didn’t want her to think that I questioned her in any way. So, I stayed, trusted, and started the grueling course of treatment.
At first it seemed to work! We could physically feel the tumor shrinking. Suddenly the sickness and weakness that came with the chemotherapy seemed worth it. I was so excited because my body was responding and killing the cancer! Until it wasn’t. Upon starting the drug Taxol, things seemed to slow down, and I felt I was at a standstill. Week after week, that stubborn tumor seemed to remain the same. Fearful, I told my oncologist. “I don’t feel this drug is working. It doesn’t feel like it’s shrinking anymore.”
Upon her own physical examination, she once again tried to reassure me that everything was going well. She thought the tumor was smaller, and besides, it could be scar tissue, it could be necrotic cells. We just don’t know until surgery. Stay the course! Trust the process. You’re doing great!
After surgery, which revealed an obstinate active tumor left over after months of chemotherapy, I finally sought a second opinion. It was my dear friend who found a new doctor who specializes in triple-negative breast cancer. Dr. Rebecca Shatsky is a brilliant oncologist at the University of California in San Diego. The first thing she told me was that she wanted to send the tumor away for genetic sequencing to determine the mutations and genetic markers that were driving this cancer. Without that knowledge, it’s impossible to know which medicines would be best and would target the cancer most effectively. The previous facility removed the existing tumor at the time of my surgery for a double mastectomy, put it on ice somewhere, and that was the end of that! No testing, no research, no real consideration for the best long-term outcome for the patient in their care. I felt a profound sadness upon hearing this…a loss and a sadness for what could have been, had I only sought a second opinion earlier.
My new oncologist wanted to put me back on chemo upon discovering that my cancer was PD-L1–positive enough that a platinum-based chemotherapy just might give me a greater statistical chance of staying in remission for good. So with trepidation, a deep sigh, and many tears, I agreed. And I terminated my relationship with my original team of doctors. However, the platinum chemotherapy didn’t help obliterate the monster within once and for all as we hoped. And 2 years after I finished that last round of chemo, I discovered the devastating news that the cancer had returned. Stage 4. With a stage 4 diagnosis, they don’t talk cure anymore. They talk treatment to prolong life and keep the cancer from spreading to other places for as long as possible. New drugs are tested, some more toxic than others, in a perpetual cat and mouse game of survival. Persistent treatment of infusions and pills, nausea and fatigue, regular blood work, and frequent scans. Always keeping a watchful eye on the monster lurking within, hoping to outsmart the clever, conniving beast! As sad as I am that I am in this new battle, I am so so grateful to be in the right place with the right doctor this time around.
I have learned that it is never too early or too late to seek a second opinion...Begin by researching specialists in your area for your specific type of cancer.
Hindsight is always 20/20. What if I had sought a second opinion sooner? Why didn’t my original doctor offer the same treatment plan and genetic testing that were offered elsewhere? Why did I have to be battling for my life with an aggressive cancer?! Why, WHY, WHY? There is no answer, and there’s no point in spinning on a merry-go-round of what-ifs and whys. But what I have learned is that it is never too early or too late to seek a second opinion. If you, or someone you know, is diagnosed with cancer, begin by researching specialists in your area for your specific type of cancer. Find a teaching or research hospital, if you can, that offers genetic sequencing and clinical trials. It’s OK to start your treatment someplace while still seeking opinions somewhere else. Trust your intuition, and know that YOU are your best advocate. Be a squeaky wheel. Call every day. Don’t take no for an answer!
This past weekend I took a trip with my husband up to Sacramento to watch our son play baseball at UC Davis. We stayed with our dear friends who have a gorgeous countryside home nearby. Nature fills my soul, and as I walked the country roads, said hello to the baby calves and their mothers, and breathed in the fresh air, I thanked God for the beauty surrounding me and for the strength within me to continue this fight. I’m not giving up, and I’m not giving in. “For every mountain there is a miracle.” I believe in miracles and continue to pray for one every day and continue to trust in that second opinion that is giving me the best chance to battle this disease.
