After treatment
The short answer on survivorship care plans
It's a written record of the treatment you had and a plan for what comes next: which appointments, which tests, which side effects to watch for, and who to call. Your oncology team should give you one. If they haven't, ask for it by name.
What to know about survivorship care plans
- It has two parts. A summary of the treatment you had, and a plan for your care from here.
- Your team should provide it. The National Cancer Institute says your oncologist or treatment team should give you a follow-up care plan.
- It should list ongoing treatment too, such as hormone therapy, along with side effects that haven't gone away.
- Every doctor you see should have a copy, including your primary care doctor.
- There's a free breast cancer template from the American Society of Clinical Oncology if you want to start one yourself.
What is in a survivorship care plan?
The National Cancer Institute describes a survivorship care plan as two documents together: a treatment summary and a follow-up care plan.
The treatment summary is the record of what happened. According to the National Cancer Institute, it should include the date you were diagnosed, the type of cancer, your pathology reports, the details of your treatment (surgeries, where you had radiation and at what dose, which chemotherapy drugs and doses), key lab and imaging reports, contact information for the people who treated you, and any problems you had during or after treatment.
The follow-up plan is the map forward. The American Cancer Society says it covers how often to schedule appointments, which tests you'll need, possible long-term or late side effects, and options for healthy living. The National Cancer Institute adds that a plan may also address emotional, social or financial needs.
Why is a survivorship care plan worth having?
During treatment, your team held all of this for you. Afterward, more of it is yours to carry, often between several doctors. The National Cancer Institute notes that treatments and tests sometimes aren't communicated between providers, and suggests asking each doctor to share visit notes with the others. A written plan makes that much easier.
It also helps with the part nobody schedules: knowing what's expected. The National Cancer Institute says a follow-up care plan can give you a sense of control. When you know which symptoms to watch for and when your next scan is, there is less to hold in your head.
And it lasts. Years from now, a new doctor may need to know exactly what you had. The treatment summary is how they find out.
Who will you see for follow-up care after breast cancer, and how often?
Follow-up care may be with your original cancer doctor, a provider who specializes in survivorship, or your primary care doctor, according to the National Cancer Institute. Either way, you should keep seeing your primary care doctor for everyday health.
For breast cancer, the American Cancer Society says follow-up visits usually happen every 3 to 6 months at first, then less often, and about once a year after five years. Your schedule depends on the cancer you had, the treatment you received and your overall health, so your plan should spell out yours.
How do you get a survivorship care plan if no one has offered one?
Ask for it by name. "Can I have a survivorship care plan and a treatment summary?" is a reasonable request at any follow-up visit, including one years after treatment.
Start your own. The American Society of Clinical Oncology has a free survivorship care plan template for breast cancer, available through the American Cancer Society. Bring it to your oncologist and fill it in together.
Collect your records. Ask for copies of your pathology reports and imaging results. The National Cancer Institute suggests asking your primary care doctor how to get your electronic medical records when you need them.
How should you use your survivorship care plan?
Keep it somewhere safe with your other medical records. Share it with every doctor you see. Bring it to appointments. And keep adding to it: the National Cancer Institute recommends keeping records of all your future visits and telling your doctor about new medicines, vitamins, herbs or supplements, and changes in your family's medical history.
Questions about your survivorship care plan to bring to your next appointment
- Can I have a written survivorship care plan and treatment summary?
- Which doctors should I see, and how often?
- Which tests will I need, and how often?
- Which symptoms should I watch for?
- What long-term or late side effects are possible with the treatment I had?
- Which records should I keep?
- Who do I call between visits, and how?
- Are there support groups or services that might help me?
Sources
National Cancer Institute, Follow-Up Medical Care
National Cancer Institute, Life After Cancer Treatment
American Cancer Society, ASCO Cancer Treatment and Survivorship Care Plans
American Cancer Society, Living as a Breast Cancer Survivor
Babette is an independent media and education company, not a medical provider. This article explains common experiences; it is not advice for your situation. All decisions about your care belong to you and your doctor.
