Lindsay Walker’s Halloween became scarier than she intended

This is a guest post by Lindsay Walker. Lindsay, 46, was diagnosed with stage 3 chromophobe renal cell carcinoma in November 2022, right after Halloween.

My kidney cancer journey began on Halloween 2022. I never considered Halloween to be “scary,” but last Halloween turned out to be one of the scariest days of my life, and the day my world would be turned upside down.

I was scheduled for a follow up MRI for an autoimmune disease that had become more symptomatic. I’d had many MRI’s before and had no nerves going in. As would be fitting for Halloween, I had an evening MRI. The parking lot was dark, the clinic waiting room and office were locked up, lights off, closed down for the day. I was led through the eerily quiet, dim hallways to the sterile MRI room. The MRI was uneventful, and as the technician walked me out she told me the results would probably show up in my patient portal before the doctor even got it. I scoffed a little and said, “I can’t believe they do that now because people find out they have cancer that way!”

The next day, I was one of those people.

I received a result with suspected renal cell carcinoma in my patient portal. As if that wasn’t enough, I also found out in the report that the (much smaller) tumor was seen on an MRI 14 months prior, but never reported to me. Not only did I have a tumor on my kidney, it had more than doubled in size in just over a year, unbeknownst to me.

Because my scan was ordered by my rheumatologist, he had to order the subsequent scans (each one being more certain it was cancer). He is amazing, and I credit him with saving my life, but as you would probably guess, he didn’t know anything about kidney cancer. I unfortunately had to wait another two months until I could finally see SOMEONE who knew SOMETHING. It would be another month after that until my partial nephrectomy and the official diagnosis of an aggressive Stage 3 Chromophobe Renal Cell Carcinoma.

Those months were easily the hardest of my life. The waiting (and waiting and waiting) was torture. Once you hear cancer, it’s always there. It might be further back in your brain one day than it is the next, but it’s always there. I was working full time as a second grade teacher while trying not to let anyone know what was tearing me up inside. I didn’t want to burden anyone with worry on the slight chance it ended up being benign. In hindsight, I regret that. I was filled with so much worry during those months and I know if I had shared with those close to me, their support would have eased some of the anxiety. If I were to advise others, I would absolutely tell them to lean on their support people, even during the diagnostic process. I had the most INCREDIBLE tribe supporting me after my surgery and just thinking about all the ways I was shown love still brings me to tears.

I have spent most of my adult life advocating, fundraising and spreading awareness for cancer causes. It’s become a passion. I have had friends, coworkers and students with cancer. My dad has stage 4 lung cancer (he’s currently crushing it!) and I feel so extremely grateful to have had a background going into this. Even though it came as a complete shock to be on the other side of it, I knew I was going to be okay. Because I wasn’t able to talk to a medical professional who knew anything about kidney cancer for so long, I had to find my own answers. Because of my background, I knew where to go for legitimate resources and what questions to ask. When I finally had the opportunity to meet my incredible urology oncologist, I left feeling very empowered because I was so prepared.

The Kidney Cancer Association was one of the first places I went for information. I was so grateful for the informative videos and the “Just Diagnosed Toolkit,” the quick replies via email and the social media posts. Since diagnosis and surgery, I have continued to follow the Kidney Cancer Association, and have gotten involved in many ways such as as an Ambassador and Imerman Angel. I am also a volunteer with the Cancer Research Advocates group at our local university hospital. I am passionate about spreading awareness for kidney cancer, specifically Chromophobe. Rare cancers don’t get as much attention as others, and Chromophobe currently has no specific treatment aside from surgery which is unacceptable and terrifying as a patient. I’m determined to help change that and my first attempt at that was helping the Chromophobe and Oncocytic Tumor Alliance (COA) Team raise $6500 in the 82K Challenge last June. I’ve also designed an awareness shirt with a portion being donated. I don’t plan to stop advocating for kidney cancer.

With Halloween coming up, I can’t help but feel that pit in my stomach. When it comes to cancer, anniversary dates become significant… Diagnosis date, surgery date, months/years cancer free (hopefully). For me, my first significant date is Halloween. However, I’m determined to make sure this year brings many more treats than tricks!