10 Ways To Get the Best Follow-Up Care for You
Updated on January 24, 2025
Follow-up care is the care you receive from your health care team after you complete your initial treatments (such as surgery, radiation therapy, and chemotherapy) for early-stage or locally advanced breast cancer. It should be customized to your unique needs.
It typically involves checking for recurrence (the cancer returning) or a new cancer, prescribing long-term treatments such as hormonal therapy, addressing treatment-related side effects, and monitoring your overall health and well-being.
“During active treatment, people put their focus on the cancer and its treatment,” says Evelyn Robles-Rodriguez, DNP, APN, AOCN, an oncology advanced practice nurse and the director of outreach, prevention, and survivorship at the MD Anderson Cancer Center at Cooper in Camden, New Jersey. “But during follow-up care is often when they’re more open to pursuing other things that can help them live a healthier life, whether it’s getting a colonoscopy for the first time, quitting smoking, or losing weight.”
Keep in mind that the health care providers and resources that might be most helpful to you during follow-up care may be different from those you relied on during active treatment. Also, you might need to advocate for yourself (or find someone to advocate for you, such as a friend, family member, social worker, or nurse navigator) to ensure you get the best ongoing care.
These tips can help you get the comprehensive follow-up care that best meets your needs, so you can heal and move forward.
1. Make a survivorship care plan
Around the time you’re completing your main treatments, ask to meet with a member of your oncology care team to have a detailed conversation about planning your post-treatment care.
At that appointment, talk about any concerns you have about your physical and mental health, which members of your health care team should be involved with, or leading, your follow-up care, and next steps. The National Coalition for Cancer Survivorship (NCCS) has a useful checklist of topics to discuss with your health care team when you’re finishing active treatment.
You can also ask your oncology care team for a survivorship care plan — a written document that includes a summary of your diagnosis and the treatments you received, information on late or long-term side effects you might develop, and personalized recommendations for follow-up care (including a suggested schedule for follow-up appointments, physical exams, and medical tests).
Typically, your follow-up check-ups (which include a physical exam) will be:
every 3 to 6 months for the first 3 years after active treatment
every 6 to 12 months for the next 2 years
once a year after that
If your oncology care team doesn’t already have a standard survivorship care plan, you can suggest they use one of the templates created by the American Society of Clinical Oncology (ASCO) as a starting point.
Ask your oncology care team if they can save your survivorship care plan in your electronic medical records. You and your health care providers can use the plan to help coordinate your care. You can share it with your primary care provider, other specialists or providers you see, and friends or family who are involved with your care.
2. Know which tests you need — and which you don’t
Monitoring for a possible breast cancer recurrence is an important part of follow-up care for early-stage or locally advanced breast cancer. Usually, if you don’t have any symptoms, physical exams and annual mammograms are the only tests recommended to screen for a breast cancer recurrence. (In most cases, an annual mammogram is only recommended if you have remaining breast tissue after breast cancer surgery — for example, if you had a lumpectomy or a single mastectomy).
Breast cancer tumor marker tests, bone scans, chest X-rays, PET scans, and CT scans are not standard tests for routine follow-up screening and should only be used if there are symptoms that could suggest a recurrence. According to ASCO, using these types of tests for routine screening can lead to overtreatment, increased anxiety, and wrong diagnoses.
3. Find the health care providers who best fit your needs
You’ll probably be receiving at least some of your follow-up care from an oncology care team, especially if you’re going to be taking hormonal therapy. You might want to consider working with a team at a specialized survivorship program or clinic.
Experts say that it’s also a good idea to regularly see a primary care provider (PCP) after completing active treatment for breast cancer. A PCP can help coordinate your follow-up cancer care and oversee your general/preventive health care.
If any of the health care providers you saw during active cancer treatment no longer seem right for you, don’t hesitate to look for new ones. You might decide that you want to find providers who are more focused on survivorship care and treatment side effects, are better communicators, or are more conveniently located.
“It’s really important for patients to know that they can switch providers at any point in their survivorship journey. There is no reason to stick with a provider who is not the right fit for you,” says Dr. Robles-Rodriguez.
It’s helpful to keep your own copy of your complete medical records, including your cancer treatment summary and survivorship care plan, to share with any new health care providers.
4. Look into cancer survivorship programs and clinics
Many cancer centers and hospitals throughout the U.S. have programs and clinics that specialize in follow-up care for cancer survivors (with some focused on breast cancer survivors). These programs and clinics have the staff, expertise, and other resources to address a wide range of post-treatment needs. They can help with treatment side effects, work with you to develop an individualized survivorship care plan, refer you to specialists, coordinate your care among different providers, recommend ways to improve your overall health, and more.
“A lot of people don’t know about the survivorship programs that are available or how they can benefit from them. It would be great if physicians more often referred their patients to these programs,” says Julia Rowland, PhD, former director of the Office of Cancer Survivorship at the National Cancer Institute, a member of the board of the National Coalition for Cancer Survivorship (NCCS), and a senior strategic advisor for the Smith Center for Healing and the Arts.
Ask your oncology care team if there is a survivorship program or clinic at the facility where you received treatment or somewhere else in your area. The cancer education website OncoLink has a database of survivorship clinics across the U.S.
If you’re having trouble getting adequate survivorship care or are confused about next steps, you can get free help over the phone from CancerCare. The nonprofit organization has professional resource navigators and oncology social workers who can help you access cancer survivorship care and find resources in your community. This service is available in English and Spanish.
6. Seek help for treatment side effects and mental health concerns
For most treatment-related side effects, there are therapies or other strategies or interventions that can be helpful. Talk with your health care providers about any side effects you may be experiencing, such as pain, fatigue, cognitive problems, neuropathy, lymphedema, loss of libido, depression, anxiety, or insomnia.
If your health care providers aren’t knowledgeable about managing side effects or, worse, are dismissive of your symptoms, don’t give up. Here are some steps you can take:
Talk with an oncology nurse or an oncology nurse navigator at the facility where you received treatment. Nurse navigators are often knowledgeable about options for managing side effects.
Ask for referrals to specialists. You may want to see a lymphedema specialist for symptoms of lymphedema, a mental health counselor if you have depression or anxiety, or a sexual health specialist if you have sexual side effects.
Look into care navigation from a specialized cancer survivorship program or clinic, a cancer rehabilitation therapy program, or a palliative care program or team.
To learn more, read the NCCN’s booklet Survivorship Care for Cancer-Related Late and Long-Term Effects and listen to our podcasts about side effects.
7. Make healthy lifestyle choices
We’ve all heard it before, but it bears repeating: Making healthy lifestyle choices can help you recover from treatment, regain your energy and strength, and in some cases lower your risk of cancer recurrence or developing a second cancer.
Lifestyle choices that can reduce the risk of cancer include: maintaining a healthy weight; exercising regularly; eating a colorful variety of vegetables, fruits, and whole grains; limiting red and processed meats, fast food, and other highly processed foods; and avoiding smoking. Using sunscreen, getting enough sleep, and seeing your primary care provider on a regular basis can also help improve your health and quality of life.
Ask your health care providers for their personalized recommendations for how you can incorporate healthy lifestyle choices in your daily routine — they may be able to provide referrals to a good smoking cessation program or a nutritionist who accepts your insurance, for example. And to learn more, read the NCCN’s booklet Survivorship Care for Healthy Living.
8. Consider joining a clinical trial
Clinical trials are carefully designed research studies that test how well new medical or behavioral interventions work in people. Some trials address issues that may be of interest to you after completing active treatment. For instance, there are trials focused on reducing the risk of breast cancer recurrence, easing treatment side effects, and making it easier to stick with hormonal therapy. Other trials are looking at ways to help people get more exercise or at therapies for anxiety or depression. Some people like the extra care and monitoring they might receive during a clinical trial, as well as the fact that they can try a new therapy or intervention at little or no cost.
“It’s always worth looking into whether there are any clinical trials that could be a good fit for you, including those that are specifically for breast cancer survivors and those that fall under primary care,” says Kathy Miller, MD, professor of oncology and of medicine and associate director of clinical research at IU Health Melvin and Bren Simon Comprehensive Cancer Center in Indianapolis, Indiana.
9. Get financial support
If you’re struggling with out-of-pocket health care costs, health insurance problems, or accessing disability benefits at any point after treatment ends, there are resources available that could help. For example, you could receive free, one-on-one financial navigation assistance from financial navigators or social workers at your cancer center or from national nonprofits such as Triage Cancer.
Learn more about managing the financial burdens from breast cancer.
10. Support better survivorship policies
The National Coalition for Cancer Survivorship (NCCS) is a nonprofit organization that represents cancer patients and survivors and works with legislators and policymakers to advocate for better care. If you’re interested in getting involved, you can join the NCCS Cancer Policy and Advocacy Team (CPAT). You’ll receive a newsletter and information about advocacy tools and training opportunities, webinars, conferences, and more.
This content is supported in part by Lilly, AstraZeneca, Biotheranostics, Inc. A Hologic Company, Pfizer, Gilead, Exact Sciences, Novartis, Seagen, and MacroGenics