“Service to others is the rent you pay for your room here on earth.” - Muhammad Ali

In 1992 the FDA approved Interleukin- 2 for metastatic renal cancer patients. According to clinical trial data, between seven and nine percent of renal cancer patients treated with high dose Interleukin-2 obtain a complete response. Twelve years later, when Peggy Zuckerman was diagnosed, it was still the only treatment available for metastatic kidney cancer.

In 2004, Peggy became one of the seven to nine percent who achieved a complete response. Since then she has been paying it forward and in the process making a difference for all of us.

Her patient story began with misdiagnosis— “which is very common with kidney cancer,” she said in an interview with Inspire.  

In July 2003, “I went to the ER because I felt terrible. I had a 6.6 hemoglobin which is about half the norm that a woman should have. They kept me overnight for two nights and gave me 3 units of blood. Then they assigned me a gastroenterologist who thought I had some sort of internal bleed.”

This preschool teacher and mother of five underwent an endoscopy and colonoscopy which showed a “tiny scabbed over ulcer.” Looking back she said, “I frankly just took what the doctor said at face value.” 

So she took his prescription: take iron pills, eat right, and reduce her stress level.

Several months on the prescribed regimen didn’t improve how Peggy felt.

The gastroenterologist performed two more endoscopies and she was told that the problem was “probably stomach striations.” 

By January 2004, Peggy was losing weight and got the first cold she had had in years. Her family physician decided to take an X-ray thinking she had pneumonia. It came back normal.

By this time, Peggy’s blood work was anything but normal with indications that something was wrong with her liver. Her gastroenterologist “finally took a family history” which included her mother’s lupus and her father’s alcoholism. With yet another mistaken assumption, the gastroenterologist ordered an ultrasound for a liver biopsy “to confirm the patient’s cirrhosis.”

The ultrasound was a lifesaver. An ultrasound technician found Peggy’s cancer. As the technician began moving her transducer over Peggy’s abdomen, she “suddenly whipped the screen around so that neither I nor my husband could see what was on the screen. The only thing over there was the kidney. I knew then I had something on my kidney,” Peggy remembers.  

Unfortunately, “this is where the wall of silence dropped... where I couldn’t be told anything, ‘the doctor would talk to you but you are going to have a CT scan.’ That happened several hours later and still, no one would say a damn thing to me,” she said. “I could see the CT guys behind the glass wall, they were talking about me, they were very worried but no one was talking to me.”

Not until 7:30 that evening did the gastroenterologist tell her that “there is a mass on your kidney.”  

Peggy is from North Dakota. Growing up, “we didn’t have a doctor most of the time and if you had big trouble, you went to Mayo Clinic. People would say, it’s only 600 miles away, get in the car.” 

Even though she was living near Los Angeles, California at the time, her first thought was to go to Mayo Clinic. 

A call for an appointment and one red-eye flight later, she arrived at Mayo. There she saw a urologic surgeon who specialized in kidney cancer.

“He did a physical exam and he asked me, ‘didn’t your doctor feel this strange lump?’ That’s when I realized that I had not ever had a physical exam that I could remember from the gastroenterologist.”

After that, the urologist asked her what she knew about her scans. Peggy had to say, “I know that I had one, but I don’t know anything.”

“I think the thing for people to understand is that I am a straightforward thinker. When people say, be sure to ask your questions, they don’t realize that when you hear ‘cancer’ you hear ‘death’. Your brain goes into non -working mode. Patients don’t know what to ask. I hadn’t even had the wit to ask the doctor, back in LA, how big was the mass?“

Peggy’s tumor was about four inches, the size of a softball. She had metastases throughout her lungs “too many to count.” But her urologist said, “we have a plan for you to manage the metastases,” and she met with an oncologist specializing in kidney cancer treatment. 

After surgery, Peggy began her journey to becoming a patient advocate.

“I went to one of the Kidney Cancer Association meetings six weeks after my surgery. Listened to a lecture that was supposed to be the highlight of the morning by a kidney cancer researcher. She gave a talk that would be appropriate for other researchers, but it was impenetrable to patients. Well that bothered me a lot.”

So Peggy started learning all the acronyms and everything she could about her cancer. 

“By summer time I could have given that lecture so that patients understood it.”

To manage her metastases, Peggy received in-hospital dosing with high dose Interleukin- 2 at the University of California, Los Angeles.

“It was the one and only medicine of the era that was FDA approved. It is kind of the grandfather of the immunotherapies we have nowadays.”

Her youngest child was a junior in high school, “There wasn’t much chance of a response but somebody has got to be in that seven percent. I thought I will do anything to be able to stay alive to see him graduate from high school and maybe get to see him off to college.”

Interleukin-2 is normally present in small amounts in the body. It enhances the ability of T-cells to target and kill cancer cells. Boosting Interleukin-2 increases the power of the immune system to eliminate cancer cells. 

“By the middle of September, the field of hundreds of lung mets was clearing up. I knew that, for certain, I would get my son off to college. Five months after, in February, the doctor said ‘basically you’re cured.’ By then I knew for sure that he wasn’t supposed to be using those words, and I protested. He said, ‘I just don’t get to say it very often, I’m going to say it in your case.’ Then he handed me a prescription for another scan in 3 months. So I might be cured, but only in 3-month increments. But you take those 3 months. From then on I scanned every 3 months for about 2 years; went to 4 months scan and later headed into the 6 month scans.”

“One can never pay in gratitude: one can only pay ‘in kind’ somewhere else in life.” - Anne Morrow Lindbergh

Her experience has taught her a lot about what to ask and what not to do when it comes to this diagnosis. Her advice to the newly diagnosed is:

1. “Realize there’s more treatments available now then there were 16 years ago when I was getting treatment. Things are changing fast in the kidney cancer world.”

2. “People need to know where the mass is and find out enough detail about their diagnosis, specifically the tumor size, the difference between a one centimeter and a 10 centimeter. Ask that early on.”  

3. “Seek out the most credible and up-to-date information and be aware that even people like the American Cancer Society are likely to use statistics that are 5 years old based on statistics from 5 years previously. A lot of the information on the Internet about kidney cancer is old.”  

4. “People are thrilled to hear ‘don’t worry I got it all’ from their surgeon. We accept this because that is what we want to hear and we don’t have the expertise or necessarily the faith that we can pursue this. That’s when people have recurrences that could have been found much sooner. Ask the doctor, ‘how do you know it won’t ever return?’ ” 

5. “Inevitably it’s a urologist that makes the official diagnosis. Kidney cancer can be one of those cancers where you have an organ removed, perhaps your whole kidney, you are not necessarily being directed immediately for a review by an oncologist. You should request a consultation with an oncologist who has experience with kidney cancer. Because again, the average oncologist is overwhelmed with lung, prostate, breast cancer and unless he specializes, he is already behind.”

For Peggy paying it forward is a necessity.  

• She started a blog which is packed full of helpful information. 

• She has served on the Roche Scientific Ethics Advisory Group. 

• She reviews research grants for the Department of Defense and the Patient-Centered Outcomes Research Institute. 

• Peggy is involved with clinical trial design and development as a Patient Advocate for the Southwest Oncology Group Cancer (SWOG) Research Network. 

• She’s served as a lobbyist and spokesperson for Action to Cure Kidney Cancer, is a member of the KCCure Kidney Cancer Patient Advisory Board, speaker/panelist for Prometheus Labs, and a board member of the Society for Participatory Medicine. 

• She is involved with the Society to Improve Diagnosis in Medicine.

Finally, she is an active member on Inspire, answering questions, and providing important information to help people in their patient journey ask the right questions. 

Look for Peggy on Inspire in the Kidney Cancer Association’s Support Community on Inspire as peggyRCC.

Sources

• Interview with Inspire. October 21, 2020.

• Atkins M, et al. High-Dose Recombinant Interleukin 2 Therapy for Patients With Metastatic Melanoma: Analysis of 270 Patients Treated Between 1985 and 1993. Journal of Clinical Oncology. September 2016.

Disclaimer

Member comments are lightly edited for length and to remove identifying information but are otherwise reproduced as they appear in the community as part of public posts.

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