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

When cancer treatment ends, many survivors feel relief-but also confusion. Who do you see now? What tests do you still need? Why are you still tired, even after months of recovery? These aren’t just questions. They’re urgent needs that, if ignored, can lead to missed recurrences, preventable health problems, or even early death. That’s where a survivorship care plan comes in. It’s not a form you file away. It’s your roadmap for life after cancer.

What Exactly Is a Survivorship Care Plan?

A survivorship care plan is a written document that two things: it tells you what treatments you got, and it tells you what to do next. It’s not optional anymore. Since 2019, every cancer program accredited by the Commission on Cancer has been required to give one to every survivor. And 92% of top cancer centers now provide them.

The plan has two main parts. First, the treatment summary. This lists every drug you took, the exact doses, the dates of radiation, the type of surgery you had, and even if you were in a clinical trial. It includes your diagnosis date, cancer type, stage, and the names and contact info of every doctor who treated you. Think of it as your medical history in one place-so you never have to repeat it again.

The second part is the follow-up plan. This is where the real value kicks in. It tells you when to come back for scans, which blood tests to get, and what symptoms to watch for. It also includes advice on how to stay healthy-like quitting smoking, eating better, or starting exercise. This part is personalized. If you got doxorubicin (an anthracycline) at a high dose, you’ll need an echocardiogram every five years to check your heart. If you had chest radiation for Hodgkin lymphoma, you’ll need a mammogram every year starting eight years after treatment.

Why Most Survivors Still Don’t Get What They Need

You might think, “I got a paper from my oncologist.” But here’s the problem: only 42% of survivors actually get a complete plan with both the treatment summary and the follow-up recommendations. Even worse, only 38% of survivors say they have a full plan that includes everything they need.

Why? Because creating these plans takes time, money, and coordination. It can take up to 45 minutes per patient. Fewer than 61% of cancer centers have staff dedicated to making them. And even when they’re made, they’re often handed to you at the end of treatment-when you’re exhausted, overwhelmed, and just want to feel normal again.

Another big issue? Primary care doctors aren’t prepared. A study found 68% of family doctors feel unprepared to manage cancer survivors without clear guidance. So you end up going to your regular doctor, who doesn’t know you got 12 cycles of chemo or had radiation to your chest. They don’t know to check your thyroid, your heart, or your bone density. That’s why survivors who use their care plan are 2.3 times more likely to get the right screening tests.

What You Should Be Screened For-Based on Your Treatment

Not all survivors need the same follow-up. Your risks depend on what you were treated with. Here’s what the evidence says:

• If you received anthracyclines (like doxorubicin) at doses over 250 mg/m²: get an echocardiogram every 5 years to monitor heart function.
• If you had chest radiation (especially for Hodgkin lymphoma): start annual mammograms 8 years after treatment-or earlier if you were under 30 when treated.
• If you got alkylating agents (like cyclophosphamide): monitor for early menopause, infertility, or increased risk of leukemia.
• If you had radiation to the head or neck: get annual thyroid function tests. You’re at higher risk for thyroid cancer and hypothyroidism.
• If you were treated for childhood cancer: follow the Children’s Oncology Group guidelines. They recommend screening for 112 late effects across 15 organ systems-everything from hearing loss to kidney damage to secondary cancers.
• If you took immune checkpoint inhibitors or CAR-T therapy: watch for autoimmune issues like colitis, thyroid dysfunction, or nerve damage. New guidelines added these in 2022.

The Children’s Oncology Group updates these guidelines every two years. The latest version includes 26 new recommendations just for newer therapies. If you’re unsure what you need, ask for your plan to be matched against the COG guidelines. Many digital tools, like OncoLife, do this automatically.

Late Effects: They Don’t Always Show Up Right Away

Late effects are health problems that show up months or even years after treatment ends. They’re not the same as side effects, which happen during treatment. Late effects can be physical, emotional, or even financial.

Common late effects include:

• Heart disease-especially after radiation to the chest or certain chemo drugs.
• Secondary cancers-your treatment may have damaged DNA, increasing risk for new cancers later.
• Neuropathy-numbness or tingling in hands and feet from chemo like paclitaxel or vincristine.
• Hormone changes-early menopause, low testosterone, or thyroid problems.
• Bone loss-steroids and hormone therapies can weaken bones.
• Cognitive issues-often called “chemo brain”-memory lapses, trouble focusing.
• Chronic fatigue-lasting longer than six months after treatment ends.

Some effects are preventable. Regular exercise cuts fatigue by 40%. Strength training helps bone density. Screening catches secondary cancers early. But you can’t manage what you don’t know about. That’s why your plan must list these risks-and what to do about them.

How to Use Your Plan-And Why Most People Don’t

Here’s the hard truth: only 41% of survivors bring their care plan to their primary care visits. Why? Many don’t understand it. Others think their oncologist will handle everything. Some lose the paper. Others feel like they’re done with cancer-and don’t want to think about it anymore.

But here’s what works: keep your plan in your phone. Take a photo of it. Save the digital version. Print a copy and keep it in your wallet. When you see a new doctor, say: “I’m a cancer survivor. Here’s my care plan. Can we go over it together?”

Ask your oncologist to send a copy to your primary care provider. If they don’t have an electronic system, email it. If your plan doesn’t name who’s responsible for what-ask them to fix it. Who’s in charge of your heart check? Your bone density scan? Your mental health?

Survivors who actively use their plan have 23% fewer emergency room visits and 18% fewer hospital stays in the first two years after treatment. That’s not just better health-it’s lower costs and less stress.

What’s Changing in Survivorship Care (2025)

The field is moving fast. In 2023, ASCO launched a digital builder that creates personalized plans in under 10 minutes. It uses 42 treatment variables and matches 95% of manual plans. AI models are now predicting your risk of heart damage after radiation with 84% accuracy.

Some centers are using genomic data to personalize follow-up. If you have a high polygenic risk score for breast cancer, your screening might start earlier. If you have a genetic mutation like BRCA, your plan will reflect that.

The big push now is integration. CancerLinQ, a national initiative, is testing how to share survivorship data between oncology and primary care systems using standardized tech. And the NCI’s SUSTAIN trial is testing whether automated reminders and alerts to doctors can boost plan use.

But progress isn’t equal. Only 31% of safety-net hospitals provide full plans. If you’re uninsured or underinsured, ask if your hospital has a survivorship navigator. Many do.

What to Do If You Don’t Have a Plan

If you finished treatment and never got a survivorship care plan, don’t wait. Here’s what to do now:

1. Call your oncology clinic and ask for your treatment summary and follow-up plan. Say: “I didn’t receive a survivorship care plan. Can you send me one?”
2. If they say no, ask for your treatment records. You have a legal right to them.
3. Use the free OncoLife tool at oncolife.org. Answer 35 questions about your treatment, and it generates a personalized plan based on COG guidelines.
4. Take that plan to your primary care doctor. Highlight the screening tests and late effects.
5. Ask: “Who will be responsible for each part of this plan?” Get names and numbers.

You don’t need to be an expert. You just need to ask. And keep asking until you get what you need.

If you’ve survived cancer, you’ve already done the hardest part. Now it’s time to protect your future. Your survivorship care plan isn’t paperwork. It’s your right. And it’s your lifeline.