Renal Cell Carcinoma Survivor
The Plan that Saved My Life
Peggy Zuckerman received a shocking diagnosis of metastatic renal cell carcinoma in 2004. She credits the expert medical team at a leading cancer facility and a successful immunotherapy treatment with saving her life. Today, she is devoted to cancer education and helping shape medical research and care for other cancer patients.
Routine lab work in 2003 showed I was extremely anemic. I was sent to the emergency room and hospitalized for two nights. I received three units of blood and had an endoscopy and colonoscopy. My doctor said I had a tiny, scabbed-over stomach ulcer. I was a compliant patient, following his recommendations to eat well and take iron supplements. Instead, I lost weight, had night sweats and felt even more run down. My doctor attributed it to many things, including menopause, running a family and a business, and even a family history of alcoholism. He ordered a test that first required an ultrasound. Within seconds of starting the ultrasound, the technician stopped talking and turned the screen away so I couldn’t see it. I knew then that something was wrong. Hours later, my doctor told me I had a mass on my kidney.
After researching kidney masses, my husband and I realized mine could, and should, have been found much earlier by a simple ultrasound. In the previous eight months, despite my failing health, my doctor hadn’t ordered one. The pathology report showed there was never a stomach ulcer, and I lost confidence in my doctor. Adamant about finding a kidney cancer expert, I sought a second opinion at a well-known hospital across the country.
When I arrived at the hospital, all I really knew was that I had a mass. After more tests, I met with a doctor the same day, who told me I had metastatic renal cell carcinoma (RCC). The mass on my kidney was 10 centimeters — the size of a softball. It was bigger than my kidney. Even more shocking, my lungs were filled with metastases. The mets looked like snowflakes all over a black background. Even before we realized what all of this meant, the doctor said he had a plan.
Removing the tumor was the first order of business, followed by immunotherapy. I met with an oncologist and was overwhelmed. I didn’t know anyone who’d had RCC, and I’d never heard of this type of treatment. I learned it was the only medicine at the time approved to treat metastatic RCC. I was desperate to know what to expect, so my oncologist gave me the name of a patient who’d been treated with this type of immunotherapy. That patient told me honestly that the treatment was hell, and he would do it again in a heartbeat.
Less than a week later, I had the surgery. The oncologist gave me the option of receiving immunotherapy there or at a hospital near our home. I chose to be closer to our children, so I flew home a week after the surgery.
After healing from the surgery, I was ready for the immunotherapy, but the new oncologist told me about a clinical trial that involved a targeted therapy drug. He explained that if the clinical trial wasn’t successful, I could try the immunotherapy treatment next. However, if I opted for the immunotherapy first, I would be disqualified from the clinical trial. I chose the clinical trial.
For eight weeks, I gave myself injections twice a day, and life went on as normal. I felt well enough to fly to my daughter’s college and drive home with her cross-country. But test results at the end of the trial showed it didn’t work. The mets in my lungs continued to grow.
More test results showed I was still healthy enough to receive immunotherapy. Because of the potential serious side effects, the treatment would be four cycles of inpatient treatment for five nights, with doses given by IV every eight hours. I was told it would feel like the worst flu I’d ever had. I’d never had the flu, so my only concern was how bored I’d be during treatment. I loaded up on books, CDs and DVDs. That plan was completely useless because I have very little memory of any of it.
I had 10 doses the first week. I slept or was out of it most of the time. That also included vomiting, diarrhea, and extremely high and extremely low blood pressure. During the second week in the hospital, I had only seven treatments. They withheld them and gave me a series of medications to treat the side effects until I was healthy enough to receive another dose. I went home for a week between treatment weeks, but I was still pretty woozy.
About halfway through the treatment cycle, CT results showed significant shrinkage of the mets. I was thrilled and eager to finish the treatment. Six weeks after my last dose, CT results showed the mets in my lungs were disappearing. I felt good and even hosted Thanksgiving. I knew I’d live to see our son graduate from high school, and maybe even get off to college.
Five months later, CT scans showed I had no more lung mets. The immunotherapy had taught my body what to do, and continued to improve my condition. My doctor told me I was cured. I hesitated to believe him because I had read that metastatic RCC could not be cured. He admitted he didn’t get to use the word “cure” often, but he was using it with me!
For the past 14 or so years, I’ve felt like my healthy self. I’ve seen far more milestones with my family than expected. I travel and enjoy my wonderful grandchildren so much.
I am also a patient advocate for RCC, and I give input to a team of doctors who design clinical trials. I encourage you to advocate for yourself by becoming educated about your diagnosis. Get copies of your records, and ask about the risks and benefits of each treatment option. Ask about all potential clinical trials and if certain treatments or trials may make you ineligible for others. I was lucky that the path I chose worked for me, but my hope is that no one has to rely on luck for successful treatment.