The Long Arc
The Health Advocacy that never ends
April is Testicular Cancer Awareness Month. Most of what gets written this month is for the newly diagnosed. This is for the rest of us.
I had testicular cancer in June 1993. I was sixteen. I finished four cycles of cisplatin and etoposide that October. Stage IIC nonseminoma, RPLND at Memorial Sloan Kettering with seven of eight nodes positive, then chemo, then back to high school by January.
The five-year mark in 1998 came and went. I was twenty-two. I was pitching at Norwalk Community Technical College. We won the NJCAA Division III national championship that year. The cancer felt like a story I told sometimes when people asked why I had a scar.
I am writing this thirty-two years after the diagnosis. The cancer was not a story. It was a clock. And the work that started when I left the hospital in 1993 has not ended. It has changed shape, three or four times, but it has not ended.
What I want to say in this first post is simple. Survivorship and health advocacy are the same long arc. They are not two different things you do. They are one thing, and you do it for the rest of your life.
What I was told in 1993
In 1993, the conversation at the end of treatment was a handshake and a follow-up schedule. Three months. Six months. A year. The protocol thinned out over the years. Tumor markers, occasional imaging, and the assumption that if you got past five years, you had won.
Nobody mentioned cisplatin late effects. Nobody named them because nobody knew their full shape yet. The research was thin. The follow-up data were thinner. The cohort of long-term survivors had not yet been long-term enough to study.
I want to be careful here. The doctors who treated me at Bridgeport and at Memorial Sloan Kettering saved my life. They did the work that was known in 1993, and they did it well. The chemo regimen that worked on my body in 1993 is the same regimen, almost exactly, that is curing testicular cancer in 2026. The acute treatment is one of medicine’s success stories.
The gap I am writing about is not a treatment gap. It is a follow-up gap. It is the period that follows the chemo and precedes the next 30 years. And the only person who can close that gap, in 2026, is the survivor himself.
The numbers that exist now
Some of what we know about cisplatin late effects in 2026 was not known in 1993. The cohorts have aged. The data is in.
Cisplatin is detectable in survivors at thirty-one years post-treatment. The drug does not fully clear the body. It binds to tissue and stays there.
Survivors of cisplatin-treated testicular cancer have a thyroid cancer risk four to five times the baseline. A kidney cancer risk three to seven times the baseline. Higher rates of cardiovascular disease, hearing loss, hypogonadism, and secondary malignancy than the age-matched general population.
The U.S. has roughly 18.6 million cancer survivors. Only 31.5 percent of them receive cancer-focused follow-up care. The number for AYA survivors, the cohort I belong to, is worse. Roughly 70 percent of us are lost to follow-up after the five-year mark.
The NCCN survivorship guidelines for testicular cancer cover the first five years in detail. After year five, the document gets thin.
I am not citing these numbers to alarm anyone. The vast majority of cisplatin survivors live long, full lives. I am citing them because the work of survivorship is impossible without them. You cannot make decisions about your own care if no one ever told you what to watch for. And once you know, the work begins.
Advocacy is the long arc
Here is what I have learned over thirty-two years.
Acute treatment is provided by the medical system. The first five years of follow-up are done by the medical system. After that, the survivor mostly does the work himself. He learns to read the literature. He asks for a second opinion. He pushes for the imaging that the protocol does not require. He tracks his own labs across decades. He notices the symptom that the system would not have flagged. He becomes his own case manager.
That work has a name. It is health advocacy. And it is not separate from survivorship. It is the form survivorship takes after the five-year mark.
In 2025, I was diagnosed with papillary thyroid carcinoma. I was forty-eight. Thirty-two years have passed since my first cancer. I was not surprised. I had spent enough years reading the literature to know what cisplatin survivors are at elevated risk for. The data lined up with my body. The diagnosis felt less like a shock and more like a long-anticipated knock at the door, and the reason I was the one who answered the door was that I had been asking the right questions of the right doctors for a long time.
In late 2025, a small mass was found on my right kidney. It is currently under active surveillance at MSK Koch Center, under the care of an excellent doctor. The mass may be nothing. It may be something. The work of watching it is its own kind of work, and it is advocacy work.
The advocacy is not just for the patient. Cancer is a family event. Once one person in a family has been a patient long enough to know how the system actually behaves, the rest of the family starts learning. Records get kept. Questions get asked earlier. Second opinions stop feeling like disloyalty. The pattern is the same in every case I have watched. Question the first answer. Fight for the second opinion. Keep the records. Read the literature. Find the right people. Trust the survivor or the family member who has done this work before. The pattern is the long arc. It is the work that survivorship requires, and the work that families learn to do together.
This is the work I want to write about here.
What this newsletter is going to do
The Long Arc is for two readers.
The first is the long-term survivor who finished treatment a decade or two or three ago and was told the hardest part was over. It was not. The work after the five-year mark is real, and almost no one is writing about it from the inside. I am going to.
The second is the family member, the caregiver, the parent of a newly diagnosed kid, the spouse of a long-term survivor, the adult child of someone in active treatment. Advocacy work is rarely done by the patient alone. It is done by the people around him. I am going to write for them too.
I write short. I write plain. I do not editorialize the science, and I do not soften what the data says. The numbers are in here. So are the stories. So is the practical work of being your own advocate in a system that is built for the acute case and is not built for the long arc.
I am also writing a book about all of this. The Ninth Win: Cancer, Comeback, and the Health Advocacy That Never Ends is a memoir built around thirty-two years of survivorship, a national baseball championship in 1998, and the family pattern that taught me to question the first answer and fight for the second opinion. The book is in agent submission. The newsletter is the long arc the book sits inside.
If you have been told the worst is over, and you suspect that is not the whole truth, you are in the right place.
Thanks for being here. The next post is in two weeks.
— Tony Cerino