Larissa Nekhlyudov 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. Dr. Nekhlyudov is particularly interested in improving the care of cancer survivors and the interplay between primary and oncology care. You can follow Dr. Nekhlyudov on Twitter.
Primary care providers (PCPs) play an important role in the care of a person across their life span. For people who are in good health, their PCP may be the only health care professional they see. For those who develop a short-term illness, their PCP may be the first point of contact with the health care system to seek treatment for that illness. And for those who may have a chronic medical condition, their PCP may also take on the role of coordinating their care. Ideally, PCPs develop long-term relationships with their patients. This relationship can be particularly helpful when patients develop a serious illness like cancer.
Throughout the cancer experience, continuing to see your PCP is important. This is because your PCP will be able to:
Rely on your long-term relationship, which existed before the cancer diagnosis
Translate and explain information given by your oncologist
Provide “holistic” care to the whole person and care for other medical conditions
Be readily available for urgent care and prescription refills
Provide emotional support
Assist with coordinating care and communicating with specialists
Even before a cancer diagnosis, PCPs play an essential part in preventing cancer. PCPs counsel their patients on both risky and beneficial health behaviors, including those around tobacco use, diet, physical activity, sun protection, and alcohol use. They also offer vaccines, including for hepatitis B and human papillomavirus (HPV), which can help protect against certain types of cancer. Less often, your PCP may prescribe medications that have been associated with reducing cancer risk among those at a higher risk, such as aspirin for preventing colon cancer or tamoxifen for preventing breast cancer.
PCPs also play a key role in cancer screening. They may coordinate your physical examinations and Pap tests, laboratory testing based on your risk factors and preferences (such as prostate-specific antigen testing), and imaging tests (such as mammograms). They may also offer referrals for other screening tests, such as colonoscopies, by following recommended guidelines based on your age, sex, and other risk factors, such as family history. Your PCP will also ask about your family history and, if needed, can refer patients for genetic counseling and/or testing.
Most cancers are detected in primary care settings, and PCPs often lead the process at this phase of care. Specifically, they may guide your referrals to appropriate specialists and offer psychosocial support, including psychological, interpersonal, financial, and insurance help. Patients may seek their PCP’s input regarding treatment options, often relying on their PCP’s understanding of their overall health, values, and preferences that has been built over time.
During cancer treatment, the role of the PCP may become more complex, especially as the delivery of the cancer care moves mainly to oncology practices, cancer centers, and other additional health care providers. However, this phase may also involve your PCP’s management of chronic medical conditions, help with non-cancer-related urgent care, and a continued emphasis on healthy living, such as help with quitting smoking, following a healthy eating plan, and making sure you are getting enough physical activity.
During cancer survivorship, after you have completed treatment, your PCP may play a different role. They may be the only doctor involved in your ongoing care or they may share overseeing your survivorship care with oncology providers. During this phase, focus is on watching for any recurrences and new cancers, managing physical side effects and psychosocial side effects, managing any other chronic diseases, and supporting healthy living. Communicating and coordinating across the health care team is very important throughout survivorship. Meanwhile, people with advanced cancer who may need to have ongoing or intermittent treatment may see their PCPs less often. However, their PCPs can continue to play an important supporting role in helping them with their health care needs.
Finally, PCPs may care for their patients at the end of life by offering psychosocial support; providing referrals to hospice care (if they have not already done so); helping with symptom management; assisting with defining end-of-life preferences, values, and overall health; and coordinating communication across specialists.
However, all cancer diagnoses are different, and a person’s care following diagnosis through the end of life has to be personalized for the patient. It is important to know that your PCP may not be able to provide all the cancer-related care you need. That is why you are encouraged to build a relationship with your entire cancer care team, who can help you handle cancer-related and overall health care issues.
Below are some ways you can better utilize your relationship with your PCP to improve your overall cancer care:
1: Find a PCP you trust.
If you don’t already have an established relationship with a PCP or you’re going to change your PCP, there are several places you can start. First, you can ask your oncology team or a local survivorship program for a referral. You can also ask your family, friends, or peer support group members for suggestions.
It can be helpful to have a PCP who is in the same health care system as your cancer care team. This way, they can easily share electronic health records. When health care professionals are in the same system and share electronic health records, they can see visits, imaging tests, and laboratory tests ordered by others. This helps to reduce miscommunication in your care.
Some people may also benefit from seeing an “oncogeneralist,” which is a PCP with training or interest in cancer care and survivorship. Seeing an oncogeneralist is best for those with a complex cancer treatment plan.
Once you’ve found a PCP, the next step is to schedule an appointment and determine if the PCP is a fit for you.
2: Ask your specialists to copy your PCP on their notes (and vice versa).
Sharing medical records is good, but even when the same electronic health system is used, the PCP may not get all the information from the oncology team or other specialists. Because of this, you may want to ask your cancer specialist to copy your PCP on all notes. Other health care providers on your cancer care team may not want to see all primary care notes, so ask them if they do. If you are seeing health care providers in different systems, even if you ask the PCP to be copied, that may not happen or may be delayed because practices sometimes still rely on sending information by mail or fax. It’s important to make no assumptions and ask your PCP if they received your specialist’s notes.
3: Use online patient portals.
Most electronic health records now offer patients access to their appointment notes, imaging test results, and laboratory test results. Use this tool to better inform yourself about your care. It helps to read the notes written by your health care providers. Then, ask questions to clarify information if needed.
4: Maintain regular care with your PCP to build trust.
Even when you’re receiving regular follow-up care by your oncology team, contact with your PCP is still important, including for people who are still receiving cancer treatment. Continuing to see your PCP, even if for a short visit, through a message via your patient portal, or with the use of telemedicine, helps to promote communication. It also makes it easier to transition back to primary care when the time is right.
Acknowledgment: This post is based on my experience as a PCP and a cancer survivorship provider. It also takes into account input and suggestions of cancer survivors and health care providers who engaged in discussions about this topic on Twitter.