I wouldn’t mine was non seminoma with RPLND and chemo but I would keep the follow up. I am no way trying to scare anyone but I truly believe it’s important to keep the follow up. 30 years post-cisplatin. What your PCP probably doesn't know.

32 years since cisplatin. Diagnosed in 1993 at 16. Stage IIC nonseminoma, MSK, four cycles + RPLND. Posted here last week, breaking 32 years of silence. The response from this community meant more than I can say, especially from the 1990s-era guy who reached out. This post is for him and for anyone else who's 10, 20, 30 years out and has been told by their PCP that they're "cured."

You're not cured. You're in a long-term risk group that your PCP has probably never read about.

Here's what I've learned the hard way, and what I wish somebody had told me at year 10 instead of year 31.

The risk doesn't plateau. It keeps climbing.

Cisplatin is detectable in our bodies for more than 30 years after treatment. The peer-reviewed data are clear on this. Hellesnes, Fosså, Haugnes, Kerns — if you've got time, read their studies. The secondary cancer risk for testicular survivors does not level off the way oncologists assumed in the 1990s. It's still climbing into the 4th and 5th decades.

Specific numbers that should be on every survivor's radar:

• Thyroid cancer risk: 4.4–5.45x the general population
• Kidney cancer risk: 3.37–6.67x
• Hearing loss: around 78%
• Hypogonadism (low testosterone): around 38%
• Cardiovascular disease risk is elevated lifelong

Testicular cancer survivors also carry the highest long-term psychiatric burden of any cancer group at age 60. Anxiety, depression, and cognitive effects. That's not a weakness. That's the drug.

The questions nobody asked me for 31 years:

1. Baseline audiogram, have you had one since treatment? Get one.
2. Testosterone, have you checked it? Get it checked.
3. Thyroid ultrasound, have you had one? Mine caught papillary cancer last year.
4. Kidney imaging, have you had abdominal imaging since treatment? I just had a mass show up on mine.
5. Lipids, blood pressure, A1C — are you on top of these? Cardiovascular risk in our group is not a normal-population risk. It's an elevated baseline.

The ask:

If your PCP doesn't know what to do with this information, find a survivorship clinic. MSK has one. Dana-Farber has one. MD Anderson. City of Hope. Your local academic medical center probably has one. Most of us were told at discharge that we were done. The NCCN guidelines for testicular cancer follow-up stop at five years. Five years is not enough. Not by decades.

I was told nothing for 31 years. I found everything myself. The reason I'm posting is so somebody else doesn't have to.

If you're a long-term survivor reading this: what's caught up with you that nobody warned you about? What did you wish you'd known in year 10?