Liz's Kidney Cancer Journey - Kidney Cancer Association

This is a guest post by Liz Leff. Liz is a kidney cancer survivor, Senior Corporate Relations Director at the National Kidney Foundation, and a member of the International Kidney Cancer Coalition’s Board of Directors.

Hi, my name is Liz Leff.

It all started nine years ago. I had a simple urine test and microscopic traces of blood were found in my urine. At the time, my Primary Care Physician said 8 out of 10 people have microscopic traces of blood in their urine and it’s usually nothing to worry about. However, my doctor still wanted me to see a urologist. I was hesitant at first. I almost blew it off, but I was a single mom with a small child and reconsidered. Sure enough, after my ultrasound, the result was a tumor on my right kidney. The doctors weren’t sure what it was, but the verdict was that the tumor had to come out.

I went to consult with three urological surgeons. I immediately knew that Dr, Michael Palese at Mount Sini in New York where I live was the right choice for me. I felt very at ease and confident he would be the best when I met him.

Dr. Palese couldn’t say for sure that it was cancer, but his feeling was, it was stage 1 renal cell carcinoma (RCC). We agreed Dr. Palese would do the surgery laparoscopically, and hopefully it would only be a partial nephrectomy. He would do whatever he could to avoid removing the whole kidney.

Dr. Palese was completely on target with his assessment. It was about a 4 cm tumor, and it was RCC. Luckily the margins were cleared during surgery and my follow up would be annual surveillance and scans.

I did see a medical oncologist initially, but I felt more comfortable having Dr. Palese oversee my care. They kept seeing things in my scans which was so anxiety inducing. I was so scared. Dr. Palese was there for me through it all – he was pretty much the only person I could count on for help. Finally, after 6 months of scans I was on an annual scan schedule.

“Single mothers don’t have time to think about themselves. How could I now think about myself and take care of my daughter?”

So how did I feel about this whole experience? Scared, clueless, embarrassed, ashamed, and all alone. I was a single mother with a 6-year-old little girl. I had abysmal health insurance. I didn’t really understand what a cancer diagnosis meant, even after the tumor was removed. Would I die, would my daughter lose her mother, how would I pay my hospital bills, what if the cancer came back?

Single mothers don’t have time to think about themselves. How could I now think about myself and take care of my daughter? Additionally, I didn’t know how to explain to my small child what was happening. I remember so clearly the day of my surgery and having to hand off my daughter to some friends. It was one of the worst feelings and memories I have ever had. I told her I needed an operation and that I would be back in a few days. She didn’t understand so much, but I did. All I could think of was what if something went wrong, and I couldn’t get back to her?

Thankfully, I did get back to her but it was very difficult at first. I was in a lot of pain for weeks and feeling down and out. It was extremely hard to manage my emotional state, and health, but also providing a 6-year-old with a fun and happy life. I remember she so badly wanted me to walk her to school and I didn’t know how to explain I couldn’t. So, we walked at a snail’s pace, and it actually turned into the motivation I needed to get healthier and stronger as fast as I could. My daughter gave me the strength to push forward.

Then there was my support system or lack thereof. My parents were abroad for two years and because treatment was surgery, and not chemotherapy or radiation, they decided not to come help me. They didn’t see my diagnosis as real cancer. Many things were said to me by family and friends that made me feel so isolated and afraid to discuss my situation. Things like “it’s just surgery so it’s not real cancer,” just put it behind you, are you sure the doctor didn’t make a mistake since you look healthy, only eat organic food, what did you do in a past life that you brought this upon yourself. I even had someone send me a book that talked about willing your cancer away with positive thoughts.

I didn’t know where to turn for kidney cancer resources and I tried therapy, but that made it worse. I didn’t want to sit and talk about cancer. I felt like I had to apologize to people for having cancer. I felt like I had to justify my cancer diagnosis and what I was feeling.

So, what did I do? After my initial anger, and feelings of abandonment by my family and friends, I turned to exercise, and eating well. I got myself in the best shape I had ever been in. I never felt stronger or healthier. I started to surround myself with people who cared. I focused on raising my daughter, and work. But I still kept very quiet about my experience with cancer for a very long time.

The silver lining finally came when I was hired at the National Kidney Foundation. I am now the Senior Corporate Relations Director and have led and grown the area of kidney cancer. When I first started at NKF, I worked with one kidney cancer company. Now I partner with about 15.

I’m also many years cancer-free, now, and my daughter is 16 – we’re thriving. Through my work, and in drawing on my personal experience, I am proud to be in a position to help other patients.