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Patient Stories

Voice of Kidney Cancer – Joanne DiFulvio

Voice of Kidney Cancer – Joanne DiFulvio

In 2006, I was recovering from unrelated surgery when I became ill. I went to the ER where a CT exam was ordered to see if I had torn internal sutures. It was during that exam when it was discovered that I had a 6CM mass on my left kidney. They call it incidental finding. 

I was terrified. I was only 58 years old at the time. My own mother passed away from cancer. All I could think of is how she suffered towards the end of her disease. 

My family surrounded me and we had a consult with a local urologist. He didn’t answer my questions. He didn’t treat me with compassion. Needless to say, we didn’t proceed with him. We opted to seek care at Roswell Park Cancer Institute in Buffalo. While there, I saw Dr Hyung Kim, a Urological Oncologist. 

After consulting with Dr. Kim, it was determined that due to the size and placement of the tumor, it was best to remove the entire kidney. I remember him telling me “JoAnn, you will not die from this. I will take great care of you.” 

I had a laparoscopic radical left nephrectomy on April 17th, 2006. I was discharged the next day and after recuperating from surgery, life went back to normal. The pathology came back: Clear Cell Renal Cell Carcinoma. The tumor was 5.5X2.8cm. My doctor recommending continued surveillance for recurrent disease.

After over 11 years of remaining free of disease, a routine CT found small bilateral (both sides) lung nodules. Because of my history, I underwent a CT guided core needle biopsy of one of the nodules in 2017. The pathology showed it was renal cell carcinoma. I now had metastatic disease. 

Since the nodules didn’t change, I opted to watch them and remain off any systemic treatment. In 2019, my lung nodules grew significantly in relation to prior scans, so we opted to start treatment. My oncologist suggested Sutent or Votrient as a first line treatment due to the time between my initial diagnosis and recurrence. 

I opted to start with Votrient. After a quick step up from 400mg, to 600mg. I now take 800mg/daily. My first scans after I started treatment showed a 50% reduction in tumor size. Each subsequent scan afterwards has shown no growth which is referred to as “stable”. I’ve been tolerating the medication well but there are some side effects such as painful mouth sores and neuropathy in my hands and feet. The medication also makes me very tired. I treat these side effects when they occur and rest when I need to. I pray for continued success with this line of treatment but understand there are several treatments if this should stop working.

I am a very outgoing, positive person and I’ve always tried to let this lead me throughout my journey with cancer. I’m living my life the best way I can. I have an incredibly supportive family which I love dearly. I hope my story offers hope for someone dealing with a recent diagnosis or someone contemplating treatment after a recurrence. 

I never wanted to have a recurrence of cancer. I’m grateful that the options to treat kidney cancer have significantly improved since I was initially diagnosed over 14 years ago. I have so much more life to live. My best wishes to everyone on their journey.

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