Why You Need A Survivorship Care Plan After Cancer

Last Updated: March 14, 2022

A survivorship care plan is a record of a person’s cancer treatment and recommended follow-up care after treatment ends. This type of document plays an important role in the ongoing care of cancer survivors. In this video, Dr. Jyoti Patel and cancer survivor and patient advocate Samantha Watson discuss what cancer survivors should know about survivorship care plans, such as what a plan includes, how they benefit survivors, and how you can download survivorship care plans at Cancer.Net and Cancer.org.

More Information

ASCO Cancer Treatment and Survivorship Care Plans 

Cancer.org: ASCO Cancer Treatment and Survivorship Care Plans

The Importance of Follow-up Care

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Why You Need A Survivorship Care Plan After Cancer

Voiceover: When cancer treatment is completed, there's a lot to process. A good way to plan for this transition is to keep a record of important details about your diagnosis, your specific treatments, and recommendations for your medical care going forward. To help organize that information all in one place, your oncologist should prepare a survivorship care plan for you.

Jyoti D. Patel, MD, FASCO; Thoracic Oncologist; Member, American Society of Clinical Oncology:  A survivorship care plan is really the record of a patient's cancer history and recommendations for follow-up care. It's really an emphasis on the time from treatment through survivorship and long-term follow-up. It emphasizes a team approach for prevention, for surveillance, for interventions, for consequences of cancer or its treatment, for coordination between specialists and primary care physicians.

Voiceover: The American Society of Clinical Oncology has a survivorship care plan form that can be downloaded, and used for any type of cancer, as well as forms for specific cancer types.

Dr. Patel: Key components of a good survivorship care plan include details about the cancer diagnosis: what's the date of diagnosis, what's the location, stage, and histologic subtype. It's important to have the names and contact information of the providers you saw, as well as the treatment facilities. And then, we want to have good documentation of what treatments were administered, whether they were chemotherapy, radiation, or surgery, or hormonal treatments. In addition to those key elements of a survivorship care plan, survivorship care plans really benefit survivors by outlining a roadmap for future therapies. So there's specific recommendations for ongoing care, like how often should you schedule visits, or have surveillance testing, what are strategies for managing long-term and late effects of treatment. In addition, survivorship care plans include health promotion strategies, so, can you change your diet, can you include exercise, or stop smoking, or reduce alcohol consumption to improve your outcome.

Voiceover: Samantha Watson is a 2-time cancer survivor. When she was 21, she was diagnosed with a type of cancer called Ewing sarcoma. She had surgery to remove and replace part of her tibia, and received months of high-dose chemotherapy. Several years later, she was diagnosed with myelodysplastic syndromes, an early form of leukemia. This was a secondary condition related to the treatment for her initial cancer, and required a bone marrow transplant. With her complicated medical history, her survivorship care plan has been a critically important document that she relies on, especially when she sees a new doctor.

Samantha Watson, MBA; Cancer Survivor and Patient Advocate: In my mind, what a survivorship care plan accomplishes is a successful transition from the acute oncology care to everyday life and primary care. The day that treatment ends and you're back into your regular life, back at work, back at school, and then have to show up at a new doctor's office, most patients don't know what questions to ask and most primary care providers haven't seen many cancer survivors. And so they may not know specific risks of specific treatments or what long-term effects to look out for. And so the way I envision it is a survivorship care plan bridging that gap and making it possible both for patients to reclaim control over their health, and also arm their new providers with whatever information they need to most effectively manage their care.

Voiceover: Cancer treatments can cause long-term or late effects that can show up months or even years after treatment is finished. Making sure to share treatment details with your health care providers through a survivorship care plan can help inform them about what issues they need to be aware of, to best support your health throughout your life.

Dr. Patel: Now that there are more cancer survivors than ever before, it's important for us to understand what the consequences of having a cancer diagnosis and treatment might be. And so, having a record of all of the therapies that you've been given and strategies for future care is absolutely essential. So the survivorship care plan includes all therapies that could have impacts on other organs, and so having a history of breast cancer, for example, in which you'd received chemotherapy that could affect your heart could be important when you see a cardiologist. So it's important to include these care plans when you meet a new doctor for a specific complaint--it may have relevance in how they approach a new problem.

Voiceover: Your oncologist should be able to maintain an electronic form of your survivorship care plan as part of your electronic medical record, or EMR. But it is also recommended that you keep a copy in your personal files in a format you prefer. This record means you always have easy access to details of your care at your fingertips even years later. And it means you can quickly share it with your primary care physician and other doctors you see.

Dr. Patel: There are forms that are available that can be electronically uploaded into medical charts. A lot of EMRs have a place for survivorship plans. I'd encourage patients or cancer survivors to have those on hand. And it may be that you share these with other providers, so with primary care providers, you may come back from your oncologist and say, "this is what I'm doing now that I've treated my colon cancer," for example, and this is the strategy that I'll need. With smartphone technology, it's easy to have that as a picture in your wallet, for example. I would encourage cancer survivors to have them at home, to perhaps carry them electronically, but also to encourage their primary care physicians to include it in their electronic medical record for all care providers to see.

Voiceover: Survivorship care plan forms from the American Society of Clinical Oncology can be downloaded at Cancer.Net and Cancer.org.

Dr. Patel: And although many providers are giving patients survivorship care plans now, often it gets lost in a busy clinic, or if you've completed therapy several years ago. So my advice would be to ask your care team to prepare a survivorship care plan for you that you can use to interact with other medical care members.

Samantha Watson: In the best-case scenario, I think a medical team will hand it to a cancer survivor, but if that doesn't happen, there are still ways for cancer survivors to access their own, and then bring it back to their doctor and say, "hey, can you fill this out for me?" So it's not a huge ask. I think a lot of times, patients and family members don't want to ask more of their doctors, because their doctors are very, very busy people, and we want to be mindful of their time, but I think this is a really important one that's worth asking.

Dr. Patel: You can find a myriad of cancer survivorship resources at Cancer.Net. Included there are templates for survivorship care plans, information about how you can best interact with your cancer care team, and strategies for the best survivorship you can have going forward.

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