A Guest Blog by Lisa Craine
2010 was supposed to be a year filled with weddings, graduations, anniversaries and so many beautiful milestones to celebrate. Cancer was not one of these joyful moments we were looking forward to commemorating. I was healthy, active, and feeling fine, except for some fatigue which I thought was normal for a working mom of two, wife, and community volunteer. I had taken my eldest son to see a gastroenterologist, and while the doctor was examining my son, he asked how I was feeling. My response was, “I’m fine”, but he kept the questions coming. His instincts told him that something was wrong with me. I finally admitted to fatigue and - oh yes - this minor pain under my right breast. The next day I stepped out of work for an abdominal ultrasound to determine if I had gallbladder disease and returned without concern of something being seriously wrong. I thought the ultrasound was simply inconvenient and unnecessary. Well, thank goodness for the inconvenience, and the instincts of a great doctor.
Back at work, I received a call from the gastroenterologist, who said my gallbladder looked great. I thought this was wonderful news, but his next sentence took my breath away “You have a very large mass on your liver,” he said. My world, as I knew it, was forever changed.
I saw a local oncologist who was going to biopsy the mass, suspecting it was bile duct cancer. This oncologist explained to me that if it was cancerous, the only treatment would be chemotherapy and advised me that the mass could not be surgically removed. Later, I would realize that only a liver surgeon should make this determination, not an oncologist. I was told that chemotherapy would extend my life, maybe six months, but would not be curative, and I left the appointment with the oncologist’s recommendation that I should make arrangements for the end of my life. This was the day my hope was taken away. I truly believed I was going to die.
My husband did not accept this outcome and began to research options extensively. He secured a second opinion at Cleveland Clinic with Dr. John Fung, a liver transplant surgeon. When we met Dr. Fung, our hope was restored. He advised us that I would first need a biopsy to confirm the mass was cancerous, but that, contrary to what I had been told, he thought I would be a surgical resection candidate.
The biopsy confirmed a diagnosis of cholangiocarcinoma and I was scheduled for surgery. The eleven-hour surgery removed over 75% of my liver. I then had adjuvant chemotherapy and thought I had conquered cancer. Several short months later, I learned that my battle was not over - the cancer was back. I had a second liver resection followed by another six months of chemotherapy, but once again, cancer returned several months later. Cholangiocarcinoma is a rare and aggressive cancer with no cure, so we decided to get another second opinion.
I was nervous to tell my oncologist, Dr. Bassam Estfan, whom I love and trust, that I wanted another opinion. I didn’t want to offend him, but we believed with such an aggressive and complex cancer that I would benefit from another perspective. Contrary to my hesitation, Dr. Bassam Estfan was extremely understanding and accommodating. I recall Dr. Estfan saying, “I think it’s a good idea and I will help you.”
My medical records were gathered and sent off to Dr. Milind Javle at MD Anderson Cancer Center. My second oncology opinion with Dr. Javle confirmed the plan Dr. Estfan had recommended. Some might say, well, “wasn’t this a waste of time and energy since the result was the same?” My answer to this is no. This confirmed that we were on the right treatment path, which is comforting with a rare cancer diagnosis.
My journey has included five recurrences with eight tumors. I am confident that if I did not seek a second opinion after being told I have six months to live, I would have lost my battle to cholangiocarcinoma without ever having known there were other options for me.
I’m living proof that second opinions can be lifesaving. I am so grateful that I was able to receive a second and third opinion on my care. Now, ten years later, I mentor patients that may not realize they have options beyond their initial treatment recommendation, to help others on the scary journey of a cholangiocarcinoma diagnosis. When mentoring patients, the first piece of advice I give is to get a second opinion from a multidisciplinary team specializing in cholangiocarcinoma. The second is to have a tissue sample sent out for molecular profiling to identify targetable mutations and potential clinical trials.
This is your life, and you should never feel guilty about searching out the best doctors, hospitals, specialists, and treatment modalities. Second opinions saved my life, and I believe they can save many other lives!
The Mike Shane Memorial Fund is providing a service that will positively impact the lives of cholangiocarcinoma patients by providing knowledge and hope; two things I am told Mike truly believed in, and now, I do as well.
Author: Lisa Craine