More Than 20% of Women Diagnosed With Early-Stage Breast Cancer Stop Follow-Up Care Early

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More than 20% of women diagnosed with stage I or stage II breast cancer stopped seeing a doctor for breast cancer follow-up care early, according to a study.

The research was published in the January 2019 issue of the Journal of Oncology Practice. Read the abstract of “Factors Associated With Follow-Up Care Among Women With Early-Stage Breast Cancer.”

Breast cancer follow-up care recommendations

“It is important for patients to know that, during follow-up appointments, they are being evaluated for recurrence, evaluated for early detection of new primary tumors, and to make sure they are up-to-date with other cancer prevention activities,” said study co-author Dawn Hershman, M.D., professor of medicine and epidemiology and leader of the Breast Cancer Program at Columbia University, in an interview. Hershman also is a member of the Breastcancer.org Professional Advisory Board. “In addition,” she added, “information is rapidly changing, so keeping up with the oncologist is important to make sure the care is current.”

While there are differences in early-stage breast cancer follow-up care recommendations from national organizations, all recommend follow-up care for at least 5 years after diagnosis.

The American Society of Clinical Oncology, for example, recommends an exam by a doctor every 3 to 6 months for 3 years after diagnosis, then every 6 to 12 months for the next 2 years, and then every year. The National Comprehensive Cancer Network made its guidelines more flexible in 2015, but before that recommended exams every 4 to 6 months for 5 years after diagnosis.

How this study was done

To do the study, the researchers looked at information from 30,053 women age 65 and older who were diagnosed with stage I or stage II breast cancer and had lumpectomy between 2002 and 2007. The researchers looked for follow-up information until 2012.

The information came from the SEER Medicare database. The SEER databases are large registries of cancer cases from sources throughout the United States maintained by the National Institutes of Health.

The researchers wanted to see how many women saw either a surgeon, a medical oncologist, or a radiation oncologist in the 5 years after they were diagnosed with breast cancer.

In the first year after diagnosis:

  • 85.8% of the women saw a medical oncologist in addition to a surgeon
  • 71.9% of the women saw a radiation oncologist in addition to a surgeon
  • 66% of the women saw all three types of doctors

During the 5 years after diagnosis, 6,302 women (21.0%) stopped visiting a surgeon, a medical oncologist, or a radiation oncologist.

Women who were:

  • older
  • diagnosed with lower-stage breast cancer
  • diagnosed with hormone-receptor-negative breast cancer

were more likely to stop follow-up care in the 5 years after diagnosis.

The researchers noted that they were not able to determine the reasons why the women stopped follow-up care.

“It is difficult to distinguish whether patients were not advised to follow-up with other providers or whether they discontinued follow-up of their own volition,” they wrote. “Coordination of follow-up care between oncology specialists and other providers may reduce discontinuation rates as well as the redundancy of visits, thereby increasing clinical efficiency. Identifying patients who are at risk for early discontinuation of follow-up will eventually allow for the promotion of public health initiatives to improve access to care.”

What this means for you

This study echoes the results of earlier research suggesting that follow-up care of people treated for any type of cancer, including breast cancer, needs improvement.

The Institute of Medicine, an arm of the National Academy of Sciences, published a report in 2006 recommending that all cancer survivors receive a survivorship care plan after they were done with treatment. The survivorship care plan should include a written treatment summary and a personalized follow-up plan developed by the patient’s oncologist. The Institute of Medicine report also recommends that survivorship care planning include discussions about which doctors (oncologist, primary care doctor, other specialists) should be seen for specific follow-up care.

Despite this recommendation, many cancer survivors aren’t getting written survivorship care plans.

While this study looked specifically at follow-up care for breast cancer, a survivorship care plan would include that care.

After your main breast cancer treatment is done, it’s important to focus on what’s now most important: your good health. You have to make sure you get the best ongoing care and live your best life. If you’ve finished breast cancer treatment and your oncologist hasn’t talked to you about a survivorship care plan, it’s a good idea to bring it up at your next appointment.

Here are some questions you may want to ask your oncologist:

  • Can I get a survivorship care plan in writing that explains all the medical issues I need to consider and tells me which screening tests I need and when I should have them?
  • Which doctor should I see for each medical issue?
  • If your oncologist recommends that you see a specialist — a cardiologist, for example — and you’ve never seen one before, you may want to ask for a referral to a specific doctor.
  • If there is anything in your survivorship care plan that you don’t understand, ask your doctor or nurse to explain it.

It’s also a good idea to talk to your primary care doctor about your survivorship care plan and ask which parts of it she or he will be responsible for.

There’s only one of you, and you deserve the best care possible — both during and after cancer treatment. Because the idea of survivorship care plans is relatively new, you may have to advocate for yourself to make sure that you get a written plan.

Written by: Jamie DePolo, senior editor

Reviewed by: Brian Wojciechowski, M.D., medical adviser


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