Survivorship Plans: What You Need to Know About Follow-Up, Screening, and Late Effects After Cancer

After finishing cancer treatment, many survivors feel relief-but also confusion. Who do you see now? What tests do you still need? Why are you still tired, even though the cancer is gone? These aren’t just questions. They’re critical gaps in care that survivorship plans were designed to close.

What Is a Survivorship Care Plan?

A survivorship care plan isn’t just a piece of paper. It’s a roadmap. It combines two key parts: your treatment summary and your follow-up plan. The treatment summary tells you exactly what you went through-what type of cancer, when it was diagnosed, what drugs you got, what radiation you received, what surgeries you had, and who treated you. The follow-up plan tells you what comes next: when to get screened for recurrence, what late effects to watch for, and how to stay healthy.

The Institute of Medicine first called for these plans in 2006, pointing out that most survivors end up back with their primary care doctors-who often have no idea what treatments were given. Without this info, a doctor might miss a heart problem caused by chemotherapy or fail to order a mammogram for someone who had chest radiation. That’s why survivorship plans are now standard at 97.8% of National Cancer Institute-designated centers.

The Two Parts of Your Plan: Treatment Summary and Follow-Up

Your treatment summary needs to be detailed. It should include:

• Exact cancer type, stage, and location
• Names and contact info of all your oncology providers
• Chemotherapy drugs, doses, and number of cycles
• Radiation type, total dose, and area treated
• Surgery details-what was removed or repaired
• Any clinical trials you were part of
• Side effects you still had when treatment ended

Your follow-up plan is even more personal. It’s not one-size-fits-all. For example:

• If you had Hodgkin lymphoma and got chest radiation, you need a mammogram every year starting 8 years after treatment.
• If you received anthracycline chemotherapy (like doxorubicin) at a dose over 250 mg/m², you need an echocardiogram every 5 years to check your heart.
• If you had pelvic radiation, you may need regular bone density scans to watch for osteoporosis.

These aren’t guesses. They come from the Children’s Oncology Group’s Long-Term Follow-Up Guidelines, updated in 2022, which include 112 evidence-based screening rules for 15 organ systems affected by 17 different cancer treatments. Even if you’re an adult, these guidelines are often adapted for your care.

Late Effects: What No One Told You About

Many survivors think once treatment ends, they’re back to normal. But cancer treatments don’t just disappear. They leave behind changes that show up months or years later.

Common late effects include:

• Heart problems from chemo or radiation
• Lung scarring after chest radiation
• Thyroid issues after neck radiation
• Early menopause or infertility from chemo
• Memory and focus problems (sometimes called "chemo brain")
• Nerve damage causing numbness or pain
• Increased risk of a second cancer
• Chronic fatigue that doesn’t go away

The Children’s Oncology Group has identified 72 distinct late effects tied to specific treatments. For example, survivors of childhood leukemia who got high-dose methotrexate are at higher risk for kidney damage. Those who had stem cell transplants may develop chronic graft-versus-host disease years later.

The scary part? A 2018 study found 42% of survivors didn’t know they were at risk for these effects. That’s why your plan must list them-and what to do if you notice them.

Who’s Responsible for Your Care?

One of the biggest problems with survivorship plans is confusion over who does what. Should your oncologist keep seeing you? Or should your family doctor take over? The answer: both-but only if they talk to each other.

A 2020 audit of 1,200 survivorship plans found only 52% clearly named a point person responsible for coordinating care. That’s a problem. Without that clarity, you might get duplicate tests, missed screenings, or no follow-up at all.

The best plans assign roles:

• Your oncologist handles cancer-specific follow-up for the first 2-5 years.
• Your primary care provider manages general health-blood pressure, cholesterol, diabetes, and routine screenings like colonoscopies.
• A nurse navigator or survivorship coordinator (if your center has one) makes sure the handoff happens.

Some centers now use digital tools like OncoLife or ASCO’s Survivorship Care Plan Builder to generate these plans automatically. These tools pull data from your medical records and match your treatment to the latest guidelines. One study showed they’re 95% accurate compared to manually created plans.

Why Most People Don’t Use Their Plan

Here’s the hard truth: even if you get a survivorship plan, you might not use it.

Studies show only 41% of survivors bring their plan to their primary care visits. Why? Some don’t understand it. Others think it’s not important. Some lose it. A few don’t even get one.

Only 38% of survivors report having a complete plan with both treatment summary and follow-up recommendations. And only 28% of Medicare contractors pay for creating these plans-so many hospitals skip them because they’re not reimbursed.

But here’s what happens when people do use them:

• They’re 2.3 times more likely to get the right screening tests.
• They have 23% fewer emergency room visits in the first two years after treatment.
• They’re 18% less likely to be hospitalized.

It’s not magic. It’s knowing what to watch for-and when to act.

What’s New in 2026

Survivorship care is evolving fast. In 2022, the Children’s Oncology Group added new guidelines for immune checkpoint inhibitors and CAR-T cell therapy-two newer treatments that can cause unique long-term effects. Now, survivors of these therapies need specific monitoring for things like autoimmune conditions or prolonged low blood counts.

AI is starting to help too. In 2023, models were developed that predict cardiac damage after radiation with 84% accuracy. That means your plan might soon include a personalized risk score-not just a generic recommendation.

Some academic centers are now using polygenic risk scores to estimate your chance of a second cancer based on your genes. And pilot programs are testing wearable devices that track fatigue, heart rate, and sleep-sending alerts to your care team if something’s off.

The big push now is for EHR systems to talk to each other. Right now, 67% of cancer centers struggle to share data with primary care providers because their systems don’t speak the same language. New standards like HL7 FHIR are being tested to fix that.

What You Should Do Right Now

If you’ve finished cancer treatment:

1. Ask your oncology team: "Do I have a survivorship care plan?" If not, ask for one.
2. Make sure it includes both a treatment summary and a follow-up plan with specific tests and timelines.
3. Ask who is responsible for your care moving forward-your oncologist, your primary doctor, or a coordinator?
4. Print a copy. Save a digital copy. Give one to your primary care provider.
5. Keep it with your other medical records. Update it if you get new treatments or diagnoses.
6. Bring it to every follow-up appointment-even if you see a new doctor.

Don’t wait until you feel sick. Late effects are easier to manage when caught early. And if your provider doesn’t know what to do with your plan, give them a copy of the ASCO or COG guidelines-they’re publicly available.

Survivorship Isn’t the End-It’s a New Chapter

Surviving cancer doesn’t mean you’re done with medical care. It means your care has changed. You’re not just a patient anymore-you’re a survivor with unique health needs.

The system isn’t perfect. Many people still fall through the cracks. But with a clear plan, you take control. You know what to expect. You know what to watch for. And you know who to call when something feels wrong.

Your body went through a war. It deserves a map to heal.