I am writing this from the hospital waiting room. My father is undergoing an 11-hour surgery to remove his parotid gland and a squamous cell carcinoma that has metastasized from his cheek and invaded his facial nerve.
Several weeks ago, when the PA’s fingers moved over the mass visibly protruding from his cheek, I asked whether a PET scan would be ordered. “The surgeon will be in shortly, and he can tell you more,” she said.
The surgeon walked in and palpated the mass on my father’s face. He turned to me and said, “There was no indication to order a PET scan [when you were here previously]. That is not standard of care.”
Not standard of care.
The previous visit was just 9 months ago. A flap graft surgery was required to remove the squamous cell carcinoma from my dad’s cheek. The margins looked clear, but I know that microscopic disease can be evasive. I can’t help but wonder whether a PET scan 9 months ago would have shown hypermetabolic activity beyond the margins of the skin that was removed; or whether a PET scan would have indicated that radiation was appropriate to eradicate any other cancer cells in that area. Could a PET scan performed 9 months earlier have saved my dad’s facial nerve, preserved his quality of life, and avoided the surgery he is currently undergoing?
Treatment of the Individual
This wasn’t the first time I had heard the words “Not standard of care.” At the age of 34, 11 years ago, I was diagnosed with partially differentiated, estrogen receptor–positive, progestin receptor–positive, and HER2-positive intraductal breast carcinoma. The cancer was initially diagnosed as stage IIb, but on pathological staging it was upgraded to stage IIIa.
When I asked, “Can we do a PET scan,” I was told that a PET scan was not the standard of care.
I underwent neoadjuvant chemotherapy, a bilateral mastectomy with axillary lymph node dissection (7 of 8 positive lymph nodes), and 33 radiation treatments followed by an additional 6 months of trastuzumab—standard therapy.
Alison Rash
Six months after completing treatment, the cancer metastasized to the supraclavicular lymph nodes on the contralateral side of my neck. The first oncologist I saw next tore a sheet of the thin white paper from the exam table I was sitting on and began to draw. I asked question after question, and he drew picture after picture to answer my questions. I told him how I had asked every doctor I met with previously if they could order a PET scan, to no avail. I asked “Why would no one order a PET scan?”
“We don’t often go looking for cancer,” he said. “If we find [cancer], we are required to offer you standard therapy for stage IV disease, instead of the treatment for stage III disease, which may be curative.”
I wondered whether a PET scan would have shown that the disease was already progressing to those contralateral lymph nodes. I wondered whether that information would have indicated that a bilateral mastectomy was not necessary. I wondered if it would have indicated that a larger radiation field and more aggressive and longer systemic treatment was needed.
A Painting
I recognize that a PET scan is not an all-telling test. But I do wonder whether standard therapy may not be the best path for every patient. The standard of care seems more akin to a paint-by-number painting—not the artistically crafted masterpiece that some patients may require.
Before beginning standard therapy treatment this time, I scheduled a consultation with another oncologist in Houston. He ordered a PET scan along with a bone scan, CT scan with and without contrast, and a brain MRI plus comprehensive lab work. He told me he wanted to look inside my body from every possible angle to ascertain exactly what we were dealing with so that that he could recommend the appropriate treatment for my disease.
This was not standard therapy; this was truly personalized care.
I sat down next to him in his office after days of scans and a physical exam. His eyes met mine. “I see some women your age die in 2 to 3 years. I believe I can give you longer, and there is a small potential, but a potential that you could be cured.” I knew this, but it was the first time an oncologist dared to speak it aloud.
He repeated the pathology on the tumor. When the tumor report showed HER2 positivity, he asked to speak directly with the pathologist who performed the test. He wanted to know exactly what percentage of the cells were HER2-positive. He was told that 60% of the tumor cells were HER2-positive. This gave me a chill. The “we don’t often go looking for cancer” oncologist had recommended the standard therapy to treat this metastasis. At that time, standard therapy was ado-trastuzumab emtasine, which targets HER2 receptors and delivers medication directly into the cancer cell. If only 60% of the cells were positive, this treatment approach would have targeted only those HER2-positive cells. Would the remaining 40% of cancer cells have grown and proliferated unchecked?
My new oncologist recommended a personalized plan for me. He included traditional FDA-approved chemotherapy agents but in non-traditional combinations.
Alison Rash and her father, Gregg Aten.
After a second cycle of this non-traditional chemotherapy combination, I achieved a complete remission. I continued to travel back to Houston for scans and reevaluation every couple of months. My husband and I began the search for an oncologist closer to our home in Nebraska who would agree to follow the protocol that my oncologist in Houston had personalized for me, and to collaborate with him. We wanted a doctor who wasn’t worried about partnering on my care plan with another oncologist, and who believed that the more brilliant minds working on my disease, the better—for my life, my quality of life, and my survival.
“You’ll probably hear ‘no,’ many times before you hear ‘yes,’” my husband said. He was correct.
We visited four oncologists who gave me various reasons as to why they would not treat me on the care plan I had been given. One oncologist told me that my disease was incurable and that the protocol could give me leukemia in 5 years; another told me that the protocol was not standard of care, and they were not comfortable going outside the box. A third and fourth oncologist we visited simply said no.
When I walked into the office of the fifth oncologist, he said, “First of all, we will treat you and we will work with your oncologist in Houston. I have learned that each person is unique and each cancer is different, and we can use different therapies to treat [the individual patient].”
A Masterpiece
Two more metastatic relapses and 9 years later, I still work with oncologist #5 and my oncologist in Houston. It has been over 9 years since my first metastatic relapse; 11 years since my initial diagnosis. I have been in remission for 5 years now. I still receive continuous personalized therapy, and we continue to space out treatments and allow longer and longer breaks between cycles.
I am strong, healthy, fighting cancer, and living my life. I have watched our two children grow, one now in middle school and one in high school. This is something I didn’t think I get to experience.
Truly personalized care takes time, meticulous attention to detail, and an understanding of how a particular disease is behaving in a specific individual’s body. It takes persistence and perseverance. It takes hope.
For me, hope may or may have not changed the outcome, but it certainly changed my experience.
With the aggressive disease that my dad is facing, I wonder if truly personalized care will be what is needed for him too. Not a paint-by-number protocol—but a masterpiece.
Alison Rash lives in Lincoln, Nebraska.
Editor’s note: Ms. Rash continues to be treated by Dr. Philip A. Salem, Director Emeritus of Cancer Research at St. Luke’s Episcopal Hospital in Houston and President of the Salem Oncology Centre in Houston. She credits Dr. Salem with changing the course of her disease—and her life.
