Carrie Mann’s kidney cancer journey

This is a guest post by Carrie Mann, 48, a stage 4 kidney cancer patient from West Virginia.

My name is Carrie Mann. I am a 48-year-old mother of two from southern West Virginia, a county with not a single stop light and about an hour’s drive to anywhere.

I went to the emergency room in November 2021 for dehydration from a stomach bug. They gave me fluids and sent me home, but I ended up going back the day after Thanksgiving with further issues. They did a CT scan and discovered a 9 cm tumor on my left kidney and a 4 cm mass on a lymph node.

The only symptoms I had were lower back pain and losing weight. I have a history of arthritis, which we thought was causing the lower back pain. I am also diabetic and was on a new medication for it, which we thought was helping me lose the weight. Which is still a possibility.

I was scheduled to have my left kidney and lymph node removed in March 2022. They were unable to get the entire tumor from my lymph node due to it being too close to the aorta artery. A PET scan in April 2022 showed another mass in my periaortic and retroperitoneum lymph node – 7.7 x 5.4 cm – making it stage 4 cancer. I started immunotherapy in May and have been on Inlyta and Keytruda since then.

Right now I’m doing pretty good. My CAT scans last year showed significant decrease in tumor size and they’ve been stable ever since.

I did have severe muscle and joint pain from the Inlyta and also decreased appetite. I lost 165 lb all together. I needed to lose the weight but didn’t want to lose it that way. My side effects are managed better now but there are a few different medications as well for nausea and thyroid regulation. I am also on anxiety and depression medicine, which I’ve had off and on all my life, but this situation doesn’t help.

My daughters are doing well. My 12-year-old doesn’t talk to me much about the cancer and I try not to as well. She keeps me busy with basketball and softball. My oldest daughter, though, who is 25, lost her paternal grandmother to cancer as well as her uncle, my brother. So she got pretty upset when I was diagnosed. She’s dealing with it better now.

My oldest also just got married. That wore me out because I did a lot of the decorating but it helped keep me busy and keep my mind off things. At one time I didn’t think I would get to see this. It was beautiful.

I have a very supportive family and lots of supportive friends who would take me to treatments early on when I needed help and will still come to keep me company sometimes. But I was surprised at how much my community helped me. I’m on every church around’s prayer list. Several have taken up offerings to help with travel expenses and copays. People who went to school with my brother, some of my sister’s friends, even complete strangers have supported me financially and emotionally. And every time I see someone out that I haven’t seen for a while, they ask me how I’m doing.

The plan moving forward, unless there is significant change, is scans, monitoring, and remaining on some sort of treatment. My local care team has been wonderful, very caring.

I’d want others to know not to lose hope. When I was first diagnosed, I went down an internet rabbit hole and it was so gloomy, the statistics aren’t that great. But I’ve since learned that there are treatments and medicine is advancing every day. Hearing other people’s stories through Facebook groups, apps, and the KCA website helped me and gave me a little hope. I have to continue fighting this terrible disease for my daughters.