In her own words: living with kidney cancer

Paula is a 52-year-old “professional volunteer” and advocate for those with kidney cancer. She lives in New York and was Assistant to the President of Pace University for 17 years before learning she had cancer 9 years ago.

What was your first sign that something was wrong? What symptoms did you experience?

I had none of the usual symptoms: lower back pain, weight loss, blood in the urine. At 43, I was very active between working, biking, and traveling. In the summer before my diagnosis in January 1994, I went to a water park and was fearless, riding every ride possible. When I experienced aches and pains afterwards, I thought nothing of it. At one point, I went to a doctor and after an x-ray I was told I had “bruised ribs.” For several months, I continued to be active and still had occasional aches and pains. I was eventually diagnosed with Stage III kidney cancer.

What was the diagnosis experience like?

The diagnosis was sudden and unbelievable, since the minor aches and pains I had been experiencing were easily dismissed because of my active lifestyle. But once found, a competent team of doctors, including my primary physician, an oncologist, and an urologist were assembled to quickly begin a treatment plan.

What was your initial and then longer-term reaction to the diagnosis?

The diagnosis was overwhelming. I had some personal experience with cancer, as my mother was a breast cancer survivor. But no one in my family had kidney cancer and I didn’t fit the usual profile: older, white men who are smokers. I am a younger, African-American, nonsmoking woman. So, initially I wondered where the cancer came from. But I quickly began to gather as much information as I could to make rational decisions. Although, I definitely made some emotional decisions as well, such as the “gut feeling” not to participate in a John’s Hopkins trial that would require me to leave NY, where my supportive friends and family were, for 3 months.

How is kidney cancer treated?

Kidney cancer is generally treated first with a radical nephrectomy, which is removal of the kidney, surrounding glands and blood vessels, and a portion of the ureter leading to the bladder. Chemotherapy is usually ineffective against kidney cancer, so instead immunotherapy (Interleukin-2) is administered either in high doses (in the hospital) or low doses. Over the course of 1 year, I took cycles of low dose IL-2. Cycles were given 4 times per week for 4 weeks, with 2 weeks off between cycles. Unfortunately, about 18 months after my initial diagnosis (a typical time frame for recurrence), they found a malignant lymph node in my neck, which was surgically removed. I then chose to follow up with a combination of medications administered 3 times per week for 11 months, which included a chemotherapeutic agent—another emotional decision I made despite advice to the contrary. The treatment was stopped because I had severe pain, which turned out to be an inoperable mass encasing the abdominal aorta. To this day, I don’t know what the mass was, but over the years, it has amazingly been shrinking. Is the cancer gone? I don’t know. I have “stable disease,” so I’m getting on with my life.

Did you have to make any lifestyle or dietary changes in response to kidney cancer?

During treatment, I definitely had to decrease my activity, since I experienced extreme general fatigue and flu-like symptoms. I wasn’t able to work for a while, let alone participate in physical activity. I also didn’t travel or attend plays—things that I love to do. I altered my diet to eat more wisely by increasing my intake of fruits and vegetables and decreasing meat products somewhat. I didn’t deny myself of favorite foods, since I felt that was important to my quality of life. Since then, I do have less stamina. I haven’t returned to regular physical activity, but I do have good quality of life and am able to volunteer now to give back some of the “goodness” that I have received along the way.

Did you seek any type of emotional support?

Fortunately, I have many encouraging friends and family members who called and sent numerous cards for several years after my initial diagnosis. Many friends included my name in a prayer “chain,” called Silent Unity, which continually sent me encouraging cards. My father, who was in his 80s at the time, took 3 trains to visit me in the hospital. Other family members even offered their kidneys, although transplantation is not a treatment option for kidney cancer.

Does kidney cancer have any impact on your family?

I like to think it didn’t impact them, because I tried to minimize any impact for them. That is partly because of the dynamic in my family and because I am an independent, strong-willed person. For example, after I learned of my recurrence, I delayed telling my family the results of the biopsy until I had a plan of action.

What advice would you give to anyone living with kidney cancer?

First and foremost, be as educated as you can about the disease and treatment options. Talk to several health professionals. But also reach out to the Kidney Cancer Association to find kidney cancer survivors for information and emotional support. The median survivor rate of 18 months for kidney cancer can be paralyzing, but there are exceptions to every rule—I was diagnosed nine years ago! Once you have the facts and the encouragement to fight it, you can work on maintaining a positive attitude and a good quality of life. Finally, as soon as you can and for as long as you can, give back the “goodness” that you received along the way.

As told to ]]>Diane Voyatzis, RD]]>