Testicular Cancer Survivorship Follow-Up Questions

This page is for men who have finished treatment for testicular cancer. It explains the long-term effects NCI describes, from hearing and kidneys to heart health, second cancers and fertility, and what to ask at follow-up visits.

Testicular cancer is usually cured, and NCI says that is exactly why long-term effects matter here. The people affected live a long time afterward.

The risks track with what you received. Surveillance alone, a single dose of chemotherapy or radiation, and several cycles of cisplatin-based chemotherapy are not the same starting point.

Ask for a written list of your treatments, including the drugs and the total doses. Every question below depends on it.

NCI is specific and reassuring here. Hearing loss from cisplatin affects both ears and shows up at 4,000 to 8,000 hertz, above the range of ordinary speech.

Because of that, NCI says hearing aids are rarely needed when standard doses were used. If you are struggling in conversation, that is worth reporting rather than assuming.

Kidney filtering drops by about 15 percent on average during platinum chemotherapy. NCI says it then stays stable in the long term, without further decline.

Lungs are dose-related. In a study of 1,049 long-term survivors, restrictive lung disease (lungs that cannot fully expand) rose with the cisplatin dose. NCI reports that men who received up to 850 mg of cisplatin had normal risk.

Ask what your total cisplatin dose was. It is the number that answers both of these.

NCI reports that men treated with radiation or chemotherapy face a higher risk of heart and circulation problems. In one large analysis, the risk of dying from circulatory disease was raised after chemotherapy and after radiation.

It also reports higher rates of metabolic syndrome and low testosterone after chemotherapy.

Ask who is tracking your blood pressure, cholesterol and weight. Often that should be your primary care doctor, working from your treatment summary.

NCI describes two separate risks:

• Solid tumors inside the old radiation field, usually appearing a decade or more later.
• Acute leukemia linked to platinum drugs, radiation and etoposide.

It gives the size of the etoposide risk. At standard doses, under 2 grams per square meter in total, the cumulative chance of leukemia is less than 0.5 percent at five years. Early data suggest higher doses carry more risk.

NCI reports that in two large studies, roughly 70 percent of men fathered children after treatment. It says children do not appear to have more birth defects, while noting the data are limited.

Men are advised to wait at least three months after finishing chemotherapy before conceiving, unless banked sperm is used.

• What drugs did I have, and at what total dose?
• Should my hearing be tested?
• What is my kidney function now?
• Who tracks my blood pressure and cholesterol?
• Should my testosterone be checked?
• What is my risk of a second cancer, and does it change my screening?
• What should I know about fertility from here?

• Call 911 or go to an emergency department if you get chest pain or pressure, pain spreading to the jaw or an arm, sudden breathlessness, or stroke signs such as a drooping face, weakness on one side, or slurred speech. Heart and circulation risk is higher after this treatment, so these signs need emergency care, not a clinic call. Do not drive yourself.
• Call your care team right away if you have bruising or bleeding you cannot explain, you feel newly and deeply worn out, or you have a fever and are not currently having chemotherapy (see below if you are). Platinum drugs and etoposide carry a small later risk of leukemia, and blood counts can be checked quickly.
• A fever while chemotherapy is still running is an emergency. CDC calls a fever during chemotherapy a medical emergency. Its advice is to call your doctor immediately if your temperature reaches 100.4°F (38°C). Call at any hour. If nobody answers quickly, go to the ER or call 911.
• Call your care team within a day or two if you notice a new lump in the remaining testicle, a swollen or aching groin, hearing that has slipped, or ongoing low mood, low energy, or low sex drive that could point to low testosterone.

Cancer Staging and Biomarker Testing explain the terms that show up in testicular cancer follow-up notes. Clinical Trial vs Standard Treatment, Palliative Care, and Questions to Ask Your Doctor cover what to raise at a testicular cancer survivorship visit.

These questions were drawn from current patient guidance for testicular cancer:

• NCI PDQ — Testicular Cancer Treatment (Patient Version)
• NCI PDQ — Testicular Cancer Treatment (Health Professional Version)