At the end of 2015, I was dying. I was just 50 years old and a wife and mother of 2 teenage boys. Twelve years earlier, I had been diagnosed with ductal carcinoma in situ in my left breast. Despite a modified radical mastectomy and removal of nearly all of the lymph nodes in my left underarm—which were all clear of cancer—in 2013, I learned the cancer had metastasized to my sternum, chest wall, near my pericardium, and later my liver. I had stage IV hormone receptor–positive, HER2-negative breast cancer and was told my life expectancy was probably 2 to 3 years.
I started treatment with paclitaxel, which initially reduced the size of my tumors. After that, I had rounds of anastrozole and capecitabine, among other chemotherapies, but my cancer kept progressing. I began to accept that I was going to die.
Preparing to Die
I started making all the necessary arrangements to transition from living to dying. I signed my property over to my husband, got rid of personal items, and said my goodbyes to family members and friends—and along the way I found peace. Although I wasn’t looking forward to dying, death did not scare me. My main fear was that I would be in pain. As I was going through this adjustment process, my oncologist sent a sample of my tumor for whole-genome sequencing. It was discovered that my tumor cells had FGFR1 amplification, which qualified me for a clinical trial investigating lucitanib, an oral antiangiogenic tyrosine inhibitor, targeting the FGFR1 mutation.
I know how precious—and precarious—life is and how one mass and one scan can turn the living into the dying. Either way I’m prepared.— Judy Perkins
Tweet this quote
After just 10 days on the drug, my tumors started shrinking, and my energy level returned enough for me to go on a skiing trip. Maybe I was going to live after all, I thought. But 7 months later, my cancer started advancing, and I again went through the five stages of grief: denial, anger, bargaining, depression, and acceptance. This is what life is like for patients with metastatic breast cancer or any advanced-stage cancer. Often, there are long periods of stable disease, during which we fool ourselves into thinking we may be that exceptional responder who is cured of cancer, only to be followed by crushing disappointment when the disease progresses.
Once again, I prepared to die.
My metastatic breast cancer diagnosis had led me to become proactive in the breast cancer community. In July 2015, when I was still feeling well enough to travel, I decided to attend the National Breast Cancer Coalition’s Project LEAD program in La Jolla, California. And again, my fortunes changed.
Project LEAD (www.breastcancerdeadline2020.org/get-involved/training/project-lead), which offers a science-based training program for breast cancer advocates, is taught by scientists from around the country engaged in innovative research. Among the presenters at the conference was Stephanie L. Goff, MD, Associate Research Physician at the Surgery Branch of the National Cancer Institute (NCI), a colleague of Steven A. Rosenberg, MD, PhD, Chief of the Surgery Branch at the NCI. They are evaluating a modified form of adoptive cell transfer that uses tumor-infiltrating lymphocytes to target specific tumor cell mutations in patients with solid tumors, including colorectal, ovarian/endometrial, glioblastoma, pancreatic, and breast cancers, among others. After talking with Dr. Goff and learning that I might be a good candidate for the trial, I applied for entry into the study. I was the first patient with breast cancer to be accepted into the trial.
A genetic analysis of my tumor, performed by Dr. Rosenberg, found 62 major mutations responsible for my malignancy. He then extracted lymphocytes that could attack those genetic mutations, grew them in his lab, and infused them back into my body. And then I waited.
I knew this experimental therapy had a low success rate in treating cancer—only about 14%—and had not even been tried before in breast cancer. Still, although my expectations were low, I allowed myself some hope. Ten days after infusion of the tumor-infiltrating lymphocytes, I could tell the tumor in my chest was getting smaller, eventually disappearing. Two months later, the tumors in my liver vanished, and gradually all my tumors faded away.
Coping With Emotional Whiplash
Today, I have no evidence of disease. Am I cured? Since every patient successfully treated with tumor-infiltrating lymphocytes so far has remained in remission, I think I am cured, and that’s how I’m living my life. The urgency I felt to put all my affairs in order before I died has faded, and I’m determining how I want to spend the rest of my life. I’ve let go of the part of me that was dying, but I’m still struggling with putting back all the pieces of living.
Being close to death has taught me to let go of events beyond my control, and that’s a freeing experience. It has also given me a sense of responsibility to help other cancer survivors, or cancer veterans as I like to call them, attain durable remissions like mine, and I am continuing my work as a breast cancer advocate. I’ve also resumed an adventurous lifestyle spent hiking, camping, and kayaking.
Ms. Perkins lives in Port St. Lucie, Florida.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.