Laura tells KCCure about her diagnosis with stage 4 papillary kidney cancer and how she now has No Evidence of Disease (NED) from the treatment Cabozantinib. This is her story.
It wasn’t a secret that I was dreading turning 29. I felt life was flying by, and I was having a quarter-life crisis of sorts about my impending birthday. Had I done all that I wanted to do at this point in my life? Would I look back and wish I had made other choices, done more, or done less? I had no idea about the crisis of epic proportions that was lurking just around the corner.
A few days before my birthday in 2016, I woke up with intense back pain. It was like nothing I had ever experienced before, making every step a painful one. I had spent the day before in heels though, and thought maybe I had done something to aggravate an existing back injury, or maybe I was just overworked and overtired. I went to urgent care and was told I’d likely just strained a muscle and given muscle relaxers.
The pain ebbed and flowed, but didn’t fully go away throughout the week though. Then, my legs started to swell. By the time my birthday arrived that Thursday, I had to wear a dress to dinner because I couldn’t comfortably fit into pants. I made an appointment with my primary care for the following Monday morning.
By the time Monday came, my legs had ballooned. I was carrying about 15 pounds of fluid by then. My primary care did some initial testing and told me they wanted to send me for a CT scan “later in the week.” That didn’t sit well with me, so after discussing it with my husband and a close friend, I decided to go to my local ER after work that evening. I knew something was wrong, but I didn’t have any idea just how bad things were.
Many torturous hours later after waiting for the blood work and CT scan results, the ER doctor came in the room in the middle of the night and said what no one wants to hear – “There is a tumor.” I had a 13 centimeter tumor that had essentially taken over my right kidney and had begun invading my vena cava, which is why my legs had swollen so badly with it blocking my circulation. While I had no “typical” symptoms of kidney cancer before the week of my diagnosis, I had been diagnosed with hypertension the fall before, along with some abnormal blood work. My doctors at the time had brushed my symptoms off, but looking back, it was signs of kidney cancer, even though I am younger than the average kidney cancer patient by decades.
The ER doctor was incredibly kind and had already spoken with a local urologist who was going to coordinate my care. The ER doctor advised that I needed to go to a tertiary center for surgery, and that the local urologist would make arrangements for me to do so as soon as possible. In hindsight, I am grateful I was not fully cognizant of just how severe my case was. Being diagnosed with cancer is traumatic enough, but had I realized from the onset that I was already Stage IV, I don’t know if I would have been able to mentally prepare for surgery.
I had surgery less than a month later at UCLA with some incredibly amazing surgeons who quite literally saved my life and gave me a fighting chance at recovery. Dr. Robert Smith and Dr. Ronald Busuttil led my 5.5 hour surgery, which resulted in the removal of my right kidney, right adrenal gland, and 5 lymph nodes, along with a resection of my vena cava. After surgery, I was referred to an oncologist at UCLA for follow up. When my post-surgery scans in August revealed the cancer had metastasized to my liver, lungs and lymph nodes in my chest, my UCLA oncologist referred me to a local oncologist for further treatment. I am immensely fortunate to have a world-class renal cell carcinoma oncologist in my backyard, Dr. Nicholas Vogelzang, who has led my care since September. Dr. Vogelzang enrolled me into a clinical trial, and I started taking Cabozantinib, which is a form of targeted therapy.
Cabozantinib has yielded some amazing results. I have had an almost complete response on the medication; with an over 98% reduction in my tumor burden, only one lymph node remains. All the other tumors I had in August are completely gone. My clinical trial and my doctors are my heroes.They are why I’m able to continue living my life, raising my children and enjoying my time with my husband, family and friends. They are why I went from extensive metastasis to only one infected lymph node. I cannot even put into words the appreciation and respect I have for my medical team and the researchers who make clinical trials possible. Every day I walk on this earth, every sunset I enjoy, I say a silent word of thanks and marvel at the power of modern medicine and prayer.