Sean Healy’s journey with kidney cancer

This is a guest post by Sean Healy, a husband, father, avid traveler, hiker, and corporate real estate executive who was diagnosed with stage 3 kidney cancer in 2018. He is based in Richmond, Virginia.

I was diagnosed with Stage 3 Clear Cell RCC in the summer of 2018 at the age of 48.  I had not had any symptoms and was in good health. I thought my symptoms were indicative of a kidney stone but CT scans indicated I had a tumor of about 9 cm in my left kidney that included the left renal vein – a stage 3 diagnosis. On top of that, I also learned that I have a very small right kidney that was otherwise healthy.  Fortunately, scans showed no signs of metastasis to any other organs.

Needless to say, my wife, Paige, my family, and I were incredibly surprised and concerned by the diagnosis.  I had regularly gone to the doctor for annual physicals and had no prior symptoms.  The fact I had such a large tumor, that had not been diagnosed sooner, was a bit of a surprise to my local urologist as well, particularly for someone my age. Friends also wanted to know if I had just been one of those guys that never went to the doctor.  They were somewhat surprised, and knocked off center, when I would tell them I go to the doctor religiously every year.  They would regularly wonder: “Could I have some cancer like that growing in me too?”

My urologist immediately scheduled me for a partial nephrectomy, explaining that this was the gold standard for situations like mine. But he also said he needed to bring In another urologic surgeon and vascular surgeon. I started getting an uneasy feeling and inquired if my doctor had ever performed a partial nephrectomy on such a large mass.  His answer was “no” hence him wanting to bring in additional doctors for the surgery. We left his office and I told my wife that going with my local doctor just didn’t feel like the best approach. I thought we really should look into other surgical options potentially at a major cancer center outside of our hometown.

Friends and family had mixed reactions. Many people said things like, “you need to get that tumor out of you as quickly as possible!” or “my mom had a great outcome at ABC hospital for her cancer. You should go there!”, or “I have a good friend at hospital XYZ.  I would recommend going there.”

While all comments were well intended, the added pressure from family and friends, as well as them pushing us to make a quick choice, just made Paige and me more worried as we did our research and looked at different options.   

After researching information on websites like the American Cancer Society, reading medical papers on treatments and outcomes for clear cell renal cell carcinoma to learn about options, and receiving lots of input from our large network of friends, and contacts, including my urologist, we made the choice to fly to the Cleveland Clinic due to their history with partial nephrectomies and kidney cancer treatment.

Our urologist there, who specializes in kidney surgery and transplants, made it clear that my tumor size was uncommon but he felt a partial nephrectomy would be the right treatment. He also had us meet with an oncologist, who also specialized in kidney cancer, to look into targeted therapy to shrink the tumor prior to surgery, which would make it easier to get a positive surgical outcome.

After a great conversation where our oncologist got to know us and did his best to put us at ease (after my blood pressure check indicated I was NOT at ease!), we moved forward with a Votrient/Pazopanib regimen, which he said had manageable side effects. Unfortunately, liver toxicity is one of the key side effects of Pazopanib and, as a result of that, the decision was made not to continue with the medication and move ahead with scheduling my partial nephrectomy.

In December 2018, after 8 hours (longer than the expected 4-5 hours, plus some significant blood loss), the surgery was a success and we flew back to Virginia.

The month of December was a blur as I recuperated at home with a good bit of medication to manage pain. I was able to get up and around, but my body really needed time to heal and bounce back. We had an unexpected trip for a family funeral right before Christmas that really proved that I still had a lot of fatigue and needed to continue to rest. However, we got through the holidays and I was able to return to my normal work routines as we rolled into 2019.

As my incision healed and I got more active, I was really glad to get back to hiking regularly and doing daily tasks with little to no pain.

A year of scans were clear, and we moved into 2020 hoping cancer would be in the rearview mirror for good. But my 18-month scans showed something different. Being in the beginning of the COVID pandemic was pretty bad but adding a diagnosis of a recurrence of 2 cm tumor in my left kidney was really disappointing. I really worried about telling folks about the recurrence, even though we had known it was relatively likely in my case.  

After consulting with my surgeon in Cleveland and getting another opinion from Johns Hopkins, we decided cryoablation to freeze and kill the new tumor was the way to move forward, and we did this in August.

Subsequent scans came back ok but in June of 2021, we received the unfortunate news that I had a second recurrence in my left kidney of two small tumors (1 CM and 0.8 CM). Cryoablation wasn’t the best path this time due to the size and location of the tumors and the trauma to my left kidney already.

My wife and I were really concerned since there was not a clear path forward.  While we remained optimistic, it felt different this time than the first diagnosis and recurrence. The decisions for each of those seemed more certain than this time.  As we approached the appointment with my oncologist, my wife and I did a lot of talking and speculating about our potential options. We also talked about what was important to us and that quality of life was really at the top of our list.

My oncologist was great and walked us through several things that could be done. He then said to us: “All of those options are possible, but what is most important to you?” 

The question was so refreshing to hear. We shared the importance of quality of life and being able to do the things we love to do like hiking, traveling and being able to stay active.

With our response, he recommended Axitinib/Inlyta to treat my cancer as a chronic condition and see if we could maintain the size of the new masses while maintaining a high quality of life. 

I have now been taking Axitinib for ~5 months and things are going well. While there have been a few side effects to manage, I am feeling great and have been able to stay active walking, hiking and beginning to travel again. I will be back for scans in early January and fingers crossed that the two small tumors are staying that way.

While my wife and I hoped that kidney cancer would not still be an active part of our lives, I continue to be thankful for the wonderful caregivers I have, the army of folks hoping and praying that I will continue to thrive, and the new perspective my cancer journey has provided in my life. I have gratitude for every day and for many small things in my life that I might have taken for granted a few years ago. I am optimistic about my future and I know there is hope that ongoing research may identify new treatments that might cure my RCC someday.  

To those going through a kidney cancer diagnosis, and one that might be complex like mine, I encourage you to tap into all of the resources available to you to educate yourself and to learn about options to treat your situation.  While many may encourage you to hurry up and start a treatment, taking a bit of time to make an informed decision that you feel good about is really important as well.  Good luck, stay positive and keep fighting!   

Find support and information from our Patient Liaison when you contact the KCA’s Patient Navigator Program.