Late Term Effects Chemo - where I am now 14 months after reading NYTimes Article

KwakingAlong

Hi Everyone,

I'm new to these forums. I want to find a survivor support group or network.

14 months ago, I read the New York Times article titled "It takes a lifetime to survive childhood cancer", and it upended my life. I had a Wilms Tumor removal when I was 4 (left kidney only) followed by chemotherapy (no radiation). I'm 42 now. When I read the article, I was 41. In my entire life, no doctor ever told me about the late-term effects of chemo. That weekend, I was on a fall getaway with my two young kiddos <5 and my husband. My kiddos had decided to sleep with me in the king bed and relegated my husband to the sofa bed in the living room. I read that article, then related studies, and cried silently between my two kiddos. I texted the article to my husband.

Immediately after reading the NYTimes article, I found some studies on late-term effects, including the St Jude's study on Wilms Tumor survivors. It was all very sobering. In the comments of the NYTimes article, a reader mentioned the Fred Hutch Survivorship Clinic. Given that I'm in Seattle, I called and got an appointment for Feb 2024 (four months after my initial call).

At that initial meeting, my doctor asked how I knew to come in and remarked, "most people in your situation are coming in after their first heart attack". They gave me a slew of medical exams/tests to take. I did about a quarter of them and then I petered out. I have two kids, work, and life is really busy.

Summer 2024 I decided that maybe I needed a therapist to talk with but I've processed everything but this. I mentioned it a couple of times to some friends but the response is always along the lines of, "it can't be that bad", "you'll be fine", "well, we all have to die sometime", or even worse, something like "I have x issue" which is nowhere near as significant.

I know, of course, I can be an outlier. But the studies themselves seem to indicate 10-20 years reduced life expectancy (Dr. at Fred Hutch confirmed) plus significant possibilities of early onset Alzheimers, heart, kidney, and liver issues.

Fred Hutch has called a few times because they want me to follow up. I know that I'm avoiding all this and have my head in the sand. Despite the childhood cancer, growing up in a poor and broken family, I've had a pretty amazing life. I feel frustrated because this doesn't seem like something I can fight or win against.

Anywho - this is a long story to say, who else is out there dealing with this and possibly facing a "new reality" to their life? I'm interested in connecting with others in my situation!

Thank you for taking the time to read this. I'm writing this in a rush because I'm feeling the need to connect with others. If for some reason, something comes across wrong, please give me some grace and kindness!