I have stage IV renal cell carcinoma and I'm surprisingly content
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 doesnāt 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 Achillesās tendon surgery start to take their toll, my back takes more time to recover since I have stenosis, herniated disks, spondylolisthesis (donāt ask) and other āold fartā 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 āsuck it up.ā One day in November, when the pain was so severe that I couldnāt get out of the car without assistance, I went to my orthopedic surgeon to tell him itās 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, āYou have a very large lesion on your Iliac bone which is suspicious for cancer that has metastasized from somewhere.ā 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 whatās 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 ā 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 āpalliative.ā I had always thought of that word as the equivalent of hospiceāin other words, what I heard was I was dying and only had months, weeks, days to live. Now letās be clear, he never said this, but itās what my mind processed regardless of what he said. Iām certain Iām 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. Iād 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. Itās a relatively new treatment and an even newer treatment for RCC. Opdivo/Yervoy was the recommended immunotherapy treatment. The treatment was systemicāi.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 hospitalās āCancer Center.ā (They have got to find a better name. What about āThe Get-Well Center.ā)
One of the hardest things for me to deal with was understanding that, unlike my prostate, which Iād gotten out of my body in record time, the cancerous kidney wasnāt 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, āIām going to get you.ā 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 wasnāt listening to my own advice. My hip pain didnāt 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.
Itās now November, 2021, and I am tolerating the treatments very well, and my last two 3-month scans have shown stability with no growthāwhich 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 beforeāexercise is draining, naps are the norm. And while I now can play tennis again without too much pain, my game isnāt 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. Iām 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 ācancerversary.ā I am still patiently (not really) awaiting the results. Assuming they are stable, Iām going to celebrate with my family. Even if the results are not what we hope, Iāll 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.
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. Itās 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!!!
Hereās what Iāve learned in my 5 years with Stage IV rcc. āStableā is music to my ears. Iām 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!
ā¤
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. š 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 , āexisting not worse and nothing newā 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!
Iāll 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 āCā.
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, Iām 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 itās 8 oāclock 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 meā¦. 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 ? Iām a glass have full guy, but itās hard not to think there is a crack in the base. Iāve always been the rock and just donāt 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.
Hi Joel . My name is Kathryn I live in England I found out in February this year I have urotherial cancer of the renal pelvis that has spread to my lymph nodes and both lungs. Iām having chemotherapy at the moment I just wanted to say thanks for your story x
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 allās good! Itās 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 heās getting Opdivo-Yervoy infusion every 3 weeks. His tumor returned in remaining kidney so he received radiation. If they removed it surgically, there wouldnāt be enough kidney left and he probably need dialysis. So here we are. I feel so bad for him. Heās 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.
As a former Oncology nurse, I am grateful that you are sharing your journey with others. Hope, faith and positive energy have been proven to boost the human immune system and impact disease outcomes.
In July, 2009, my husband had a sudden onset of severe flank pain. The ER doctor thought it was a kidney stone, so he ordered a CT of the abdomen. It revealed a large kidney stone lodged in his left kidney next to a 7 cm solid tumor. He was advised to see a Urologist right away. Our doctor was able to schedule an appointment with a Urologist later that week. He was told that there was an 85% chance of RCC, so we scheduled a left nephrectomy for 2 weeks later. He sailed through surgery and followed up for interval tests based on the standard protocol for surveillance testing. He was told he had a 92% chance the cancer would not be back.
Fast forward to 2017. He had a mild heart attack, but had odd symptoms – a long coughing episode. So, the ER doc ordered a CT of his chest. We learned there was no heart damage from the heart attack and a few stents were inserted. A Pulmonologist came to his hospital room to discuss his CT findings – 13 small tumors in the base of both lungs, likely metastatic RCC. In 2023, a soft tissue tumor on his lower back showed up on his surveillance testing.
He has not had any treatment of any kind and his Stage IV RCC has remained very stable for over a decade. He follows up with an Oncologist every 6 months. The lung tumors shrink and grow a bit, but nothing indicates that the cancer is getting aggressive. He tells us that he had 2 patients who lived 20+ years with Stage IV.
IF his disease gets aggressive, we will choose the best course for him, but in the meantime, he lives his life as if nothing is wrong. It seems like one or two new Immunotherapy drugs are approved by the FDA each year, so there is a lot to remain positive about!
My brother had a nephrectomy 7 years ago for an incidental cancer find. Has been faithful to every 6 month follow up images. Out of the blue areas popped up involving kidney, lung, brain and spleen. Also in thyroid but appears a second primary. Having SSR radiation to brain (round 2) and switching chemo and stopping immunotherapy. Does he fall into the only 12% survival group or much lower with the given information.
I was diagnosed with Kidney cancer in Nov 2022. In Jan 2023 had my right kidney removed. Dr stated he thinks he got it all. May 2023 started to limp. I am 70 years old and active. Thought I just pulled something oplaying golf or in the gym. By Aug 2023 started becoming quite painful. Follow-up scan Late Aug 2023 revealed State. IV matastised large tumor (size of a fist) growing and destroying my iliac bone. Sep 2023 in a wheelchair at times. Pain was horrendous. Saw Dr of oncology. Told me Stage I. Doesnāt mean what is used to. Started Yerboh and Opdivo immunotherapy in Oct 2023 to Jan 20/3. By Dec 2023 feeling better. Much lower la. More mobile. Sleeping good. PET scan late Dec revealed tumor had grown. Doc explained that I had pseudo progression. This was a good thing. Scan picked up the tufmor and the cancer killing cells around the tumor. Jan :2024 continued treatment with just Opdivo. Apr 202; scan fur or is dear. I am pain free. Still a slight limp. Apr 2025 scan no detectable cancer in my body! Fully mobile and pain free. Shot my best golf round ever. 2 over 74. Did have a couple side effects. But I donāt want my money back! 33 treatment finished. 3 to go! It feels like the game ended and I wound up in overtime! So I am going to enjoy the overtime. Our healthcare is world class!
I was diagnosed with kidney cancer on April 4 2025. On April 14 CT scans of the chest, abdomen and a bone scan showed no metastases. One month later, May 6, a total nephrectomy reveled a 14cm tumor. Pathologist report stated, chromophobe RCC with sarcomatoid differentiation and tumor necrosis. A surprisingly rare form of RCC. But everything was clean. No local or distant metastases and no further treatment would be required. It seemed I was delt the luck card…. Fast forward 2 months to July 3 2025. Additional CT scans and MRIs have reveled metastatic RCC in the lungs, liver and pelvis. After seeing the oncologist again, not good news. This is a rare form of highly aggressive metastatic RCC with no real effective treatments. We live in Ann Arbor MI where UofM has one of the largest research hospitals in the world. I’m being treated there, thankfully. I’ve been asked to join a trial study of Tivozanib and Nivolumab. Anxious, nervous and not sure what to expect.
What happened to Joel Stern?
My name is Jim
2021. I had a surgery to remove cancers tumor in my kidney 4.7 cm two years later had pain in my pelvis area and my rib cage
Orthopedic doctor requested an MRI and my primary doctor requested an MRI and CT scans
There were two spots one of my pelvis and the other one my seventh rib cage
My primary doctor recommended an oncologist, but we have to wait like two weeks to see him
And when I saw the oncologist, he said to me exactly. I will have a treatment for you take two years and have you cancer free couldnāt believe it.
Anyway, the thing is I developed reaction to the Chemo. I was taking I was immune targeted therapy
We lower the dosage to 20 mg from 40 mg most of the tablets of the infusion. I have no issue with than then three months ago we went back to 30 mg a day so far so good. I take 40 mg and next day I take 20 mg
Thereās a slight improvement and itās stable.
Remember when I started the treatment after six months my CT shows healing so hopefully we get back to that and take care of it .
Grateful to find this
https://m.youtube.com/watch?v=xZlNo0iKP48
Thank you for sharing this honest and hopeful perspective on living with stage IV renal cell carcinoma. Reading real experiences about ongoing treatment, managing metastasis, and finding quality of life ā even with advanced disease ā can be incredibly encouraging for others facing similar challenges. Itās a reminder that metastatic RCC can often be managed as a chronic condition with the right care, support, and treatment plan.
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Thank you for all the stories of your experiences. On July 1, 2025, I passed 7 kidney stones, and the ER doctor saw something on the CT scan that he referred to a kidney expert. More tests were ordered any at the end of July I learned I had stage IV kidney cancer (4 cm / 1.5 inches) that had spread to my lower spine. I was referred to oncology team who ordered radiation therapy to shrink the cancer on my spine (my back had been killing for almost a year), and in the first week of November I started my immunotherapy (nivo & ipi). After the first 3 months, the cancer mass shrunk by 1 cm / 0.4 in), and the cancer on my spine had not grown. Just waiting for my 6 month results, but other than itchiness (managed with gabapetin), I have worked and travelled for 3 weeks in Europe with no problems. I count my blessings every day, and appreciate how much science and the medical professionals have helped me through this first phase. Its so inspiring to hear everyone’s positive stories, and I hope that everyone gets to live as well and as long as you can. Big hug and warm wishes…