What Survivors Should Know When Transitioning From Cancer Care to Primary Care After Treatment: An Expert Q&A

April 4, 2023
Youngjee Choi, MD, and Larissa Nekhlyudov, MD, MPH, FASCO

Youngjee Choi, MD, is an assistant professor in the Departments of Medicine and Oncology at Johns Hopkins University School of Medicine in Baltimore, Maryland. She has been instrumental in the development of the Johns Hopkins Primary Care for Cancer Survivors clinic and currently serves as its program director. Larissa Nekhlyudov, MD, MPH, is a professor in the Department of Medicine at Harvard Medical School and is a practicing internist at the Brigham & Women's Hospital in Boston, Massachusetts. She is also the clinical director of internal medicine for cancer survivors at the Dana-Farber Cancer Institute, where she offers clinical care for long-term survivors of childhood and adult cancers. You can follow Dr. Nekhlyudov on Twitter. View disclosure information for Dr. Choi and Dr. Nekhlyudov.

A primary care provider (PCP) can and should play an important role in the care for all people living with and beyond cancer. During cancer treatment, a lot of attention is focused on treating the cancer, but a PCP can help manage other medical conditions that can impact someone’s overall and long-term health, such as high cholesterol or high blood pressure. PCPs can also see their patients with cancer for new and urgent problems that may arise that do not involve cancer or its treatment.

Having regular visits with a PCP during cancer can help them stay updated on their patient’s cancer care, including the treatment and its possible long-term side effects. This can help make the survivor’s eventual transition back to primary care easier down the road.

It is natural to have questions and concerns about leaving cancer care and returning to the care of a PCP. Here are some common questions cancer survivors have about the transition back to primary care and ways to make this transition easier.

At what point in the cancer experience will someone transition back to the care of their PCP?

Your cancer care team may recommend transitioning your care to your PCP at different points in the cancer experience. The timing of the transition and what exactly that transition will look like may depend on your type of cancer, the cancer’s stage, and the type of treatment you received. You may be transitioned back solely to the care of your PCP soon after treatment ends or years after treatment. Or, you may continue receiving care from both your cancer care team and your PCP for a certain period of time. 

Survivors may have different preferences for when and how this transition back to primary care happens, so it is important that you discuss your preferences with both your cancer care team and your PCP.  

Will the cancer care team coordinate with my PCP before the transition occurs?

Good communication between your cancer care team and your PCP can help ease the transition back to primary care. This communication can happen in a number of ways. One way is by using a formal survivorship care plan, which includes information about your diagnosis, treatment plan, and the cancer-related issues that need attention in the months and years to come. This may also be done using a well-written note from a survivorship-focused visit with your cancer specialist that outlines your cancer-related needs for your PCP. Cancer-related needs may include ongoing testing related to your cancer or cancer treatment, as well as possible physical and emotional side effects that your PCP will need to look out for.

Before transitioning your care, it is helpful to have a visit with your cancer care team that is dedicated to discussing what you should know about going back to your PCP. This is often called a “survivorship visit.” It is also helpful to have a visit with your PCP dedicated to discussing your cancer survivorship care. These visits can help you clarify important questions about how your long-term follow-up care will be addressed and whether both your PCP and your cancer care team will be involved. These visits will also help clarify what you can expect regarding cancer-related testing, cancer-related concerns, preventive care, and managing chronic medical conditions, such as diabetes or high blood pressure. During the visit with your PCP, you should also confirm how information will be shared with your cancer care team when needed.

What are common concerns survivors have when transitioning back to the care of their PCP?

Your cancer care team has been with you throughout your cancer experience, so it is common to feel anxious when transitioning your care back to your PCP. Survivors often feel worried about not having a cancer specialist following them anymore or as often. They may also wonder what would happen if the cancer came back.

It is important to recognize that the uncertainty you may be feeling is normal, and the full transition back to primary care may take time—possibly even months or years. Discussing any worries you have with your cancer care team and your PCP, as well as how a potential cancer recurrence would be handled, may help you feel more at ease. It may also be useful to ask your cancer care team and PCP about the process of being referred back to a cancer specialist if needed.

During cancer treatment and follow-up care, you may have had regular testing, such as bloodwork, x-rays, or other imaging tests, to look for cancer growth or spread. As you transition back to your PCP, these tests may no longer be needed. While this is good news, survivors may feel anxious that something will be missed and feel like there is nothing being done to watch their cancer. Talking to your cancer care team about this fear may be reassuring. Refocusing on your overall health with your PCP in the context of your cancer history can also help ease this concern. 

How will my PCP care for me during survivorship?

During survivorship, your PCP will continue to monitor you for cancer recurrences and potential late effects of treatment, as recommended by your cancer care team. Your PCP can also help you promote healthy living by addressing physical activity and healthy eating, vaccinations, tobacco and alcohol use, and routine screenings for other cancers. We are learning more and more that practicing healthy living by eating well, exercising regularly, and maintaining a healthy weight can all improve our long-term wellbeing.

Change can be hard, but asking questions can help make the transition back to primary care easier. Some of these questions to ask your cancer care team may include:

  • What long-term or late effects should my primary care doctor and I look out for?

  • What follow-up tests will I need during survivorship?

  • What is my risk of the cancer coming back, and what symptoms should I be concerned about?

  • What survivorship resources are available to me for support?

Be sure to write your questions down and schedule a dedicated survivorship visit with your health care team to discuss them. Telemedicine visits can be a useful option for these discussions. Talking to your cancer care team and PCP about your concerns and what the next steps look like in your cancer survivorship can make a big difference in the transition.


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