The Legacy
April 11, 2024
This is a guest post by Christopher Wood, Jr, son of the KCA’s late Board Chair and friend, Dr. Christopher…
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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 Have Stage IV Cancer: The News No One Wants to Hear
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.
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
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.
April 11, 2024
This is a guest post by Christopher Wood, Jr, son of the KCA’s late Board Chair and friend, Dr. Christopher…
Read More
April 8, 2024
This is a guest post by Kieran Smith, 55, a musician based in northern California. Late last year, a gallstone…
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April 5, 2024
This story an excerpt from a blog post at City of Hope Orange County in California. Read Marcelo Vine’s full…
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29 thoughts on “I have stage IV renal cell carcinoma and I’m surprisingly content”
Joel my story is almost exactly the same. I was diagnosed in March 2019 after a sports injury failed to heal. I did radiation on the bone and Y/O immunotherapy. It’s been 2+ years on Opdivo and the kidney mass is barely measurable, likely scar tissue, and my bones are healing. I ran a 1/2 marathon on my 1st cancerversary and still paddle board and surf small waves. Good luck to you and thanks for sharing your story.
Brian – thanks for sharing and I’m so glad you are doing well and enjoying life – that’s what it is all about!
Joel,
In 2012 I had a kidney and large tumor removed. The surgeon felt confident that all the cancerous material had been removed. However, during my check up two years later, I get the call that I need to return for more test. Further testing revealed that I had stage four RCC in my left lung, rib cage and spine.
I was sixty-four years old, still working and worked out regularly. My general health was good, so the decision was made to try the Interluken chemo. It was too severe for my body and nearly killed me.
Immunotherapy was still very new in 2014, but I began my therapy in July. I have tried several different drug therapies over seven and a half years. The RCC progressed some in the first few years, but very slowly. The last four years I have been on Opdivo/Cabometyx. My condition is stable and metastasis have gotten smaller in some cases.
I am seventy-two years old and continue to enjoy a comfortable life. My wife and I have been married fifty-one years and are blessed to have our children and grandchildren close by. We drive and go when we want and take care of all our appointments.
The way I feel, I could go for another nine and a-half years.
Craig Dowdy
You are an inspiring Warrior Craig. I’m so glad you are stable and enjoying wife and being married 51 years is quite the accomplishment. Congratulations. To many more years for the both of us and all of the folks who have this disease. We are fighters!!!
Here’s what I’ve learned in my 5 years with Stage IV rcc. “Stable” is music to my ears. I’m content with that.
Stable is great Carol. Congratulations!
Joel: Thank you for sharing your story. Sounds like you are getting positive results while keeping your sense of humor (at least on the tennis court :)). As someone who was diagnosed with clear cell RCC 3 1/2 years ago, I certainly can empathize with your situation.
Keep fighting the good fight!
Sean
Thank you Sean. You keep fighting as well and let me know if there is anything I can do!
Kidney and inferior vena cava removed a year ago for a nasty, gross disgusting RCC tumor.
Found out recently that its back and Ive got a mass on my adrenal gland and some lymph nodes in chest and lung.
Started Opdivo + Yervoy – I get my 3rd infusion on Friday.
Terrified yet hopeful for immunotherapy success, the Drs at USC seem to think it will be successful.
Only real side effective gotten from the therapy so far is a pretty nasty rash – looks like chicken pox… itches like a MFer.
Thanks for your story man, positivity is the key to everything, or at least thats the mindset im living in these days.
Cancer sucks – but…. GO SCIENCE!
Hey Brian – this treatment option really works for many with manageable side effects. I had the rash but it went away. Fatigue and no thyroid are the ones that bother me today. Please reach out if you need anything and consider joining the Stage IV RCC FB site I am on. Stay strong!
Thankyou all so much for sharing your situations, I’m a newbie and you all have given me unspiation, still weighing up the treatment, but I’m now convinced there is a future….
Hey Jim – you got this! It’s hard but you can do this and enjoy years of quality time with your family and doing the things that give you joy. Please reach out if you need anything. [email protected]
I have a 10 centimetre tumour on my left kidney.
Kidney + tumour due to be removed this Wednesday.
Then I guess its years of hoping and praying.
God bless you all.
Stay strong Ralph. You can do this.
Im a 56yo Orthopaedic Surgeon in the Philippines, diagnosed stage 1V September last year. I underwent cytoredctive nephrectomy and presently on targeted therapy and immunotherapy. It gives me hope to read stage 4 survivors leading almost normal lives..
You stay strong Rolex and join the Patients (Warriors) living with Stage IV RCC FB site – lots of positive stories. Stay strong!
❤
Great information about kidney cancer . it’s really helpful for the reader.
Thank you Dr. Pawar. I appreciate it!
I have known Joel for what seems like a long time, but may be closer to 8 years. I am one of his tennis buddies (who beats him routinely), but he will never admit it. 😉 He has been fighting the good fight while becoming an advocate for those impacted by this disease. I truly admire and love him. Reading all of your comments gives me inspiration and hope. I am a man of faith and will be praying for all of you. Science has come a long way and immunotherapy seems to be providing some good results. I wish you all much healing, peace and quality time with your loved ones.
Had A-fib was on blood thinners. 8/2021 urine came out as blood (freaked out) heart doctor told me stop thinners, but See oncologist. Shows large tumor on left kidney and a bunch of marks on right lung. 11/2021 kidney removed (Jefferson ). Still marks on lung but nowhere else. Not able to urinate for 4 months, no cancer in prostate or bladder so they do some modification surgery on both 4/2022 and peeing becomes fun again lol. Lung markings still not addressed yet. 2months later My wife and son getting concerned, because of my actions they think I am having stroke. Push to get scan of brain. Shows Large lesion Oncologist wants to sit on it. My son goes off and demands he set me up at university of Pa. Go next day get MRI they say we need brain surgery tomorrow morning. Gets done ( U of P ) and 6/2022 followed by GammaKnife procedure 7/2022. Results are very good. Started immunotherapy 8/2021 opdivo/cabometyx. First 3 month check was outstanding , 6 month still held tight. 9 month coming up 4/2023.
Sorry for the lengthy story. But I am understanding now , “existing not worse and nothing new” feels good. Live your Life and enjoy (as much as fatigue allows lol) go forward and stay positive.
Thanks, your story helped. Be 71 in April looking forward to becoming a 10 % er
Very inspiring Carl. You keep fighting and looking forward to you hitting 72 this April!
I’ll be 72 this month. July will be my 24th immunotherapy Doc said if no progression shows they will stop Opdivo and stick on Cabometyx. Still feel ok just the fatigue drags on
Joel and all who contributed, thank you for this bit of hope and inspiration. I received the news one week ago today that I have MRCC. 12 years ago at age 45, I had RCC and had a partial nephrectomy. One day I had blood in my urine and being told I had cancer. I was fortunate that it was found early and after surgery, all I ever had to do was get a yearly ultrasound of my kidneys. I knew that I had had cancer, but I never thought of it as the big “C”.
They saw something where they were not looking in this years ultrasound. A lesion on my liver. I was scheduled for my 5 year colonoscopy just two days latter, so my gastroenterologist was already on speed dial. The colonoscopy is scrubbed and the next day, I’m at the hospital getting and MRI. 30 minutes after leaving the hospital, as I arrive home, I turn around to go back for blood work. Now it’s 8 o’clock at night and the doctors calling to tell me the blood work is normal, so I need a biopsy. The medical field does not move at this pace and it is scaring me…. To death.
Was referred to surgery who I saw last week. Read everything I could and was convince my ticket was punched. Was uplifted learning they can probably remove the mass on my liver and he ordered a ct scan which has not yet been scheduled. Because of a persistent cough I remain concerned it has found it way elsewhere. Tomorrow I will meet the oncologist. Will he be filled with the same optimism ? I’m a glass have full guy, but it’s hard not to think there is a crack in the base. I’ve always been the rock and just don’t know if I can play any other part. What I fear most is being ungracious when I need help and not being able to be brave in the face of this challenge. Just trying to make it real in the surreal.
Hang in there Joe. This is such a “mind F” dealing with Stage IV but it is doable. Consider joining the FB Community I started: “Our Stage IV Journey with Renal Cell…..” You may find it helpful. Remember, none of us can stop death – we are dying the minute we are born but even with this disease, we can live a long and quality life. It’s not easy all the time but it is doable. Many stories of folks doing this. I’m into year 4 and holding on. Have my ups and downs but overall, life is well-worth living.
31 years ago my father had a partial nephrectomy due to cancer in his left kidney, then in early 2021 he went to the doctor for a persistent cough and pain in right elbow. He was found to have MRCC in left lung,left lymph node,liver,oesophageal airway and left thigh bone.Over the course of the last 3years he has had numerous radiation treatments which have shrunk the tumors a rod put into his left thigh, he was on Sunitinib tablets which he developed problems with his mouth so that treatment was stopped. He then tried immunotherapy for the course of 2months which caused high calcium levels and nearly killed him, also during the time of immunotherapy found the excruciating pain which worsened over a 3year period in his right elbow was due to cancer in his upper spine and middle spinal area compressing on nerves. He now has radiation targeted at the spinal areas and a new treatment lenvatinib and everolimus tablets to see if this will help and so far all’s good! It’s lovely to read the different stories of survival wishing all the very best!
I’m sorry Bell your father is dealing with this. Please consider joining our FB Community of Stage IV patients and caregivers. It’s called: “Our Stage IV Journey with RCC….” There have been a few new approved drugs in the US including Belzutifan. May want to ask about that.
Thank you for sharing your journey. My husband lost a kidney in an accident over 40 years ago. Fast forward and a few years ago a tumor was discovered and he had surgery to remove it. He was diagnosed with renal cancer. It then metastasized to his lungs, pancreas, and liver. He had radiation, a lung resection, and Itrium 90 treatment. His immunotherapy was Opdivo infusion and Enlyta oral medication. Once he went on Medicare he lost the prescription assistance he had for the Enlyta so now he’s getting Opdivo-Yervoy infusion every 3 weeks. His tumor returned in remaining kidney so he received radiation. If they removed it surgically, there wouldn’t be enough kidney left and he probably need dialysis. So here we are. I feel so bad for him. He’s miserable. Sleeping all the time, no appetite, cold, achey. Any advice or support you could give would be appreciated.
Hi Cynthia, I’m sorry your husband is dealing with this. Just a few pieces of advice: 1) Make certain he is seeing an RCC Specialist who is trained in the most up to date treatments. 2) Don’t ever feel intimidated to get a 2nd opinion even if you like your doctor. Great minds disagree a lot with this disease. Good to get several opinions. 3)Make certain he is taking advantage of Palliative Care to help with sleep, pain management, side effects and mental health. 4) Consider joining the Community I started “Our Journey with Stage IV RCC.” You also need to give him hope by making plans, creating a bucket list not because he is dying but because he is alive and sharing inspirational stories of hope that do exist out there. I’m sorry Cynthia.