I Have Stage 4 Renal Cell Carcinoma and I'm Surprisingly Content

Advocacy Groups | <b>Kidney Cancer Assocation</b>

This is a guest post by Joel Stern, who was diagnosed with stage 4 renal cell carcinoma in 2020. This is the first in a two-part series in which Joel discusses how to take a dire diagnosis and make the best of it.

I am addicted to playing tennis. I play in the United States Tennis Association (USTA) mixed leagues, I play every Saturday with a group of guys I have played with for years, and on Sundays, I play with another group of players. I play with 18-year-old kids and adults 60 and above. Now, that love of the game doesn’t necessarily equate to being great or even very good, but I get such enjoyment out of the game and typically play four to six hours a week. However, as I get older, the five knee operations and Achilles’s tendon surgery start to take their toll, my back takes more time to recover since I have stenosis, herniated disks, spondylolisthesis (don’t ask) and other “old fart” ailments that come with the territory.

https://www.kidneycancer.org/just-diagnosed/

So, in September of 2020, when I was barely making it through matches due to excruciating sciatica pain that started at my left hip and went down my entire left leg, I assumed it was just more of the same and that I needed to just “suck it up.” One day in November, when the pain was so severe that I couldn’t get out of the car without assistance, I went to my orthopedic surgeon to tell him it’s just another one of those ortho issues and to ask for something to help with the pain. The orthopedic surgeon ordered x-rays and an MRI. I assumed I would get my results in a week and be prescribed steroids, injections, and maybe some physical therapy. The following Monday, my orthopedic doctor called and empty of emotion or empathy said, “You have a very large lesion on your Iliac bone which is suspicious for cancer that has metastasized from somewhere.” Such a cold and informal way to be told you now have a terminal illness and the impact of his news caused me to cry out for my wife Donna and wail for a bit (or was it hours?). The doctor then suggested I contact an oncologist immediately to figure out what’s going on.

"Time was of the essence - I wanted to get the cancer out of my body immediately and be cured. I wanted my old life back."

After crying buckets of tears, getting consoled by my wife, and giving the news to my three daughters, Brittany, Amanda, and Taylor, I immediately began the process of finding the right oncologist. Time was of the essence – I wanted to get the cancer out of my body immediately and be cured. I wanted my old life back.

Brittany, who is a pediatrician at a very well-respected practice close to where I live, used her connections to get me seen by the head of Oncology at the Chicago NW suburb hospital where she has privileges. I saw him a few days later and he ordered several CT and MRI scans, blood tests and a bone biopsy to ascertain the origin of this cancer. In 2007, I battled prostate cancer successfully and was cured, but for some reason I assumed this cancer was spreading from the long-gone prostate. A few days later, I got all the tests done and my new best friend, my oncologist, informed me that I had clear cell renal cell carcinoma (RCC) that had metastasized to my bone in several places on my spine from head to lower back. On my right kidney, I had a small 4 centimeter tumor that was the culprit.

It is ironic that I have absolutely no pain or discomfort with this cancerous kidney. All kidney functions and blood tests are normal. He also told me in a calming way that there was no cure for what I had, and the course of action was “palliative.” I had always thought of that word as the equivalent of hospice—in other words, what I heard was I was dying and only had months, weeks, days to live. Now let’s be clear, he never said this, but it’s what my mind processed regardless of what he said. I’m certain I’m not the only one that felt that way when given the news that they have stage IV Cancer.

Treatment

https://www.kidneycancer.org/drug-information/

The next week or so was a complete blur to me but once the tests were completed, my oncologist suggested immunotherapy. I’d never heard of immunotherapy, but came to understand that, unlike chemotherapy, which kills both cancer cells and normal cells, immunotherapy enhances your existing immune system to attack cancer cells and help locate the cancer cells so they can be killed. It’s a relatively new treatment and an even newer treatment for RCC. Opdivo/Yervoy was the recommended immunotherapy treatment. The treatment was systemic—i.e., treating all the cancer in my body versus surgery to the kidney and elsewhere. The immunotherapy was given intravenously every month where I spend a half day at the hospital’s “Cancer Center.” (They have got to find a better name. What about “The Get-Well Center.”)

One of the hardest things for me to deal with was understanding that, unlike my prostate, which I’d gotten out of my body in record time, the cancerous kidney wasn’t being immediately removed. I would have to learn to live with the cancer in my body, and with every pain in my back that felt like the cancer calling out, “I’m going to get you.” The best medical advice today was that, because the cancer had spread and was now Stage IV, the ideal treatment was to treat the entire cancer. The goal of immunotherapy is to either have the cancer go away, get smaller, or become stable. Chemotherapy for kidney cancer has never proven to be very successful in terms of longevity, while Immunotherapy was showing signs of better results.

I also had radiation to deal with my severe back pain from the Iliac lesion. Between that and the immunotherapy, I was confined to the couch like a corpse. I spent most of the day engrossed in self-pity, my anxiety and pain at an all-time high. I have always told my children that anxiety is worse than reality, but I wasn’t listening to my own advice. My hip pain didn’t go away during the radiation, but amazingly, in the weeks after the radiation finished, my pain diminished from a 9 to a 7, then to a 5, and now a 3. Radiation did the trick on my hip bone.

It’s now November, 2021, and I am tolerating the treatments very well, and my last two 3-month scans have shown stability with no growth—which suggests the current treatment is succeeding. My thyroid stopped working (but some studies suggest this indicates the treatments are effective and is a good sign), I developed severe fatigue from both the immunotherapy and the radiation, as well as a rash that caused temporary itching, which drove my wife crazy. I have nowhere near the stamina I had before—exercise is draining, naps are the norm. And while I now can play tennis again without too much pain, my game isn’t the same due to not having the stamina I used to have. Nevertheless, my tennis partners put up with me, provided I continue to display my self-deprecating on-court tennis humor. I try to play a few hours a month and need to take several breaks due to the stamina issues. I’m also jogging (or is it fast walking?) two to three miles on my treadmill every other day.

My next set of scans were done on November 18, 2021, which was my one year “cancerversary.” I am still patiently (not really) awaiting the results. Assuming they are stable, I’m going to celebrate with my family. Even if the results are not what we hope, I’ll still find some reason to be with my family. They have been my rock from day one, and we will find any reason to celebrate.

Joel Stern lives in Kildeer, Illinois. He is retired but previously held several senior in-house legal positions and was most recently the CEO of the National Association of Minority and Women Owned Law Firms. Joel has been married to his wife Donna for more than 34 years and has three amazing daughters and two grandchildren. Stay tuned for the second essay in which Joel explores the lessons learned through his kidney cancer journey.