After finishing cancer treatment, many survivors feel a mix of relief and confusion. The constant appointments, tests, and treatments are over-but now what? Who do you see? What tests do you still need? What symptoms should you watch for months or even years later? This is where a survivorship care plan comes in. It’s not just paperwork. It’s your roadmap for life after cancer.
What Exactly Is a Survivorship Care Plan?
A survivorship care plan is a written document that combines two key parts: your treatment summary and your follow-up plan. It’s designed to make sure no one forgets what you went through-and what you still need. The treatment summary lists every detail of your cancer journey: the type and stage of cancer, the exact dates of treatment, the drugs you received (including doses and cycles), radiation fields and doses, surgeries performed, and whether you were in a clinical trial. It also includes contact info for your oncology team. This part ensures that any future doctor-whether it’s your primary care provider, a cardiologist, or a new specialist-knows exactly what your body has been through. The follow-up plan tells you what comes next. It outlines when you should return for check-ups, which screening tests you need and how often (like mammograms, colonoscopies, or blood work), and what late effects to watch for based on your specific treatment. For example, if you got anthracycline chemotherapy, you’ll need regular heart checks. If you had chest radiation for Hodgkin lymphoma, you’ll need a mammogram every year starting eight years after treatment. These plans aren’t optional anymore. Since 2019, every Commission on Cancer-accredited program in the U.S. is required to offer them. And 92% of National Cancer Institute-designated centers now provide them. But here’s the catch: only 42% of survivors actually get a complete plan with both the treatment summary and the follow-up recommendations.Why Follow-Up Isn’t Just About Checking for Recurrence
Many people assume follow-up visits are only to see if the cancer came back. That’s part of it-but it’s not the whole story. Cancer treatments don’t just target cancer cells. They can damage healthy tissues too. And those effects don’t always show up right away. Some show up months later. Others don’t appear until years down the road. These are called late effects. Late effects vary wildly depending on your treatment. Chemotherapy can raise your risk for heart problems, nerve damage, or secondary cancers. Radiation can cause lung scarring, thyroid issues, or early menopause. Surgery can lead to lymphedema or bowel changes. Even hormone therapy can increase your risk for osteoporosis or blood clots. The Children’s Oncology Group, which sets guidelines for childhood cancer survivors, has identified 72 distinct late effects linked to 17 different types of cancer treatments. Their guidelines recommend specific screenings-for example, an echocardiogram every five years if you received more than 250 mg/m² of anthracycline drugs. These aren’t guesses. They’re based on decades of research tracking what happens to survivors over time. That’s why a generic check-up isn’t enough. You need a plan tailored to your treatment history. A 35-year-old woman who had breast cancer with radiation and tamoxifen needs different follow-up than a 50-year-old man who had prostate cancer with surgery and hormone therapy.Screening After Cancer: It’s Not One-Size-Fits-All
Screening after cancer isn’t the same as screening for the general public. Your risk isn’t average-it’s elevated. And the type of screening you need depends on what you were treated for. For example:- If you had Hodgkin lymphoma and received chest radiation, your risk of breast cancer is 3 to 5 times higher than average. You need annual mammograms starting 8 years after radiation-or earlier if you were under 30 at the time of treatment.
- If you had colorectal cancer and had part of your colon removed, you need a colonoscopy every 1 to 3 years, not every 10 like the general population.
- If you received alkylating agents like cyclophosphamide, your risk of leukemia increases. Your doctor should monitor your blood counts regularly.
- If you had head and neck radiation, you need annual dental exams and possibly thyroid function tests, because radiation can damage salivary glands and the thyroid.
Who’s Responsible for Your Care After Treatment?
This is one of the biggest gaps in survivorship care. After treatment ends, you’re often handed off from your oncologist to your primary care provider. But here’s the problem: most primary care doctors haven’t been trained to manage the long-term effects of cancer therapy. A 2021 ASCO survey found that 68% of primary care physicians feel unprepared to manage cancer survivors’ needs without specific guidance. That’s why the care plan is so critical. It’s not just for you-it’s for your doctor too. The plan should clearly say: Who is responsible for what? Should your oncologist handle follow-up for the next two years? Should your primary care provider manage cholesterol and blood pressure? Who orders the mammogram? Who checks your thyroid? Without this clarity, care falls through the cracks. One survivor might get a routine physical but never get the cardiac echo she needs. Another might be referred for a colonoscopy but never told why. Studies show survivors who bring their care plan to their primary care visits are 37% more likely to get the right follow-up tests. Yet, only 41% of survivors actually bring their plan to those appointments. Why? Often because they don’t understand it, or it’s too long and confusing. That’s why digital tools like the ASCO Survivorship Care Plan Builder and OncoLife are changing the game. They generate clear, personalized plans in under 10 minutes using your treatment history.What You Can Do Right Now
If you’ve finished treatment and haven’t received a survivorship care plan, ask for one. Don’t wait. You have the right to it. Here’s what to ask for:- A written treatment summary that includes your diagnosis, dates of treatment, drugs, doses, radiation fields, surgeries, and trial participation.
- A follow-up plan with specific screening schedules (e.g., “Mammogram every year starting 8 years after radiation” or “Echocardiogram every 5 years”).
- A list of possible late effects based on your treatment.
- Recommendations for healthy living: exercise, diet, smoking cessation, alcohol limits, weight management.
- Names and contact info for your oncology team and who to call if you have new symptoms.
What’s New in Survivorship Care (2025)
The field is evolving fast. In 2022, the Children’s Oncology Group added new guidelines for late effects from immunotherapy and CAR-T cell therapy-treatments that were rare just five years ago. Now, doctors must monitor for immune-related side effects like thyroid dysfunction, colitis, or neurological issues that can appear months after treatment ends. AI is also entering the picture. New models can predict your personal risk for heart damage after radiation with 84% accuracy. Some academic centers are now using polygenic risk scores to estimate your chance of developing a second cancer based on your DNA. And technology is making plans easier to use. Mobile apps linked to wearables can now track your heart rate, activity levels, and sleep patterns-alerting you and your doctor to changes that might signal a late effect before you even feel symptoms. But the biggest challenge remains: access. Only 31% of safety-net hospitals provide comprehensive survivorship plans, compared to 78% of academic centers. If you’re in a rural area or rely on Medicaid, getting a full plan can be harder.Why This Matters Beyond Your Health
Survivorship care plans don’t just improve your health-they save money. Survivors who follow their care plans have 23% fewer emergency room visits and 18% lower hospitalization rates in the first two years after treatment. That’s not just good for you-it’s good for the system. Medicare now offers 5 quality points to providers who create these plans, but reimbursement still only covers 38% of the actual cost. That’s why many clinics struggle to staff the role of survivorship coordinator. The average plan takes 45 minutes to create-and that’s without EHR integration. The bottom line: you survived cancer. Now it’s time to thrive. But thriving means knowing what to watch for, when to get tested, and who to call. A survivorship care plan isn’t a luxury. It’s your insurance policy for the next 20, 30, or 40 years of life after cancer.Do I still need to see my oncologist after treatment?
Yes, but not forever. Most survivors see their oncologist every 3 to 6 months for the first 2 to 5 years after treatment, depending on cancer type and risk. After that, care usually shifts to a primary care provider who uses your survivorship care plan to guide screenings and manage late effects. Your oncologist remains available if cancer returns or if complex issues arise.
What if I never got a survivorship care plan?
Contact your oncology clinic and ask for one. Even if it’s been months or years since treatment ended, you’re still entitled to it. If your clinic doesn’t have a template, request the ASCO Survivorship Care Plan template. You can also use free tools like OncoLife (oncolife.org) to generate your own plan based on your treatment history.
Can my primary care doctor handle everything after cancer treatment?
They can handle most routine care-blood pressure, cholesterol, vaccines-but only if they have your survivorship care plan. Without it, they may miss key screenings like cardiac monitoring after anthracycline chemo or mammograms after chest radiation. The plan gives them the roadmap. Without it, they’re flying blind.
Are late effects the same for everyone who had the same cancer?
No. Late effects depend on the exact treatments you received, your age at treatment, your genetics, and your overall health. Two people with stage III colon cancer might get different chemo regimens-one might get oxaliplatin (which causes nerve damage), the other might get capecitabine (which causes hand-foot syndrome). Their late effect profiles will differ. That’s why personalized plans matter.
Is there a cost to get a survivorship care plan?
No. Survivorship care plans are part of your standard cancer care. Medicare and most private insurers cover the time and resources needed to create them, especially since they’re now a required standard in accredited cancer programs. If someone tries to charge you for it, ask for clarification-you shouldn’t pay out of pocket.
