Breast Cancer Follow-Up Care Should Be Personalized Based on Cancer Characteristics
Current follow-up care guidelines on monitoring for a new, primary breast cancer; local recurrence; distant recurrence; or other health conditions that may develop because of breast cancer treatment are fairly uniform for anyone who’s been diagnosed with early-stage breast cancer.
A study suggests that considering information about the cancer’s stage and receptor status can help doctors offer more personalized follow-up care recommendations.
The research was published on March 6, 2023, by the journal Cancer. Read the abstract of “The influence of anatomic stage and receptor status on first recurrence for breast cancer within 5 years (AFT-01).”
Local recurrence is when the cancer comes back in the same breast or the area near the same breast. Distant recurrence is when the cancer comes back in a part of the body away from the breast, such as the bones or liver. Distant recurrence is also called metastatic recurrence.
Follow-up care recommendations after breast cancer treatment
Early-stage breast cancer survivorship care guidelines from the American Cancer Society (ACS) and American Society of Clinical Oncologists (ASCO) published in 2015 say:
Primary care doctors should base follow-up care on a person’s age, diagnosis, and treatments received.
Survivors should have a detailed cancer-related history and physical exam every three to six months in the first three years after completing their main breast cancer treatments, every six to 12 months for the next two years, and every year after that.
Women who had a mastectomy should have an annual mammogram on the remaining breast.
Women who had a lumpectomy should have an annual mammogram on both breasts.
Women with a history of breast cancer don’t need routine breast MRI screening unless they are considered to have a high risk of recurrence.
Primary care doctors should tell women about the signs and symptoms of breast cancer recurrence.
Primary care doctors should assess a survivor’s family history of cancer and offer genetic counseling if it seems the person might have a genetic mutation linked to a higher risk of breast cancer.
Primary care doctors should tell survivors who have been prescribed hormonal therapy to take the full course of the medicine, usually five or 10 years.
Primary care doctors should screen people at average risk of recurrence for other cancers the same way they would screen people in the general population.
Women taking tamoxifen or another selective estrogen receptor modulator (SERM) should have an annual gynecologic exam.
Primary care doctors should assess survivors’ concerns about body image and offer a referral for psychosocial care, if needed.
Primary care doctors should monitor survivors for symptoms of lymphedema, heart problems, cognitive problems, depression, fatigue, osteoporosis, pain, infertility, sexual function problems, and hot flashes and other menopausal symptoms and offer a referral to an appropriate specialist, if needed.
Primary care physicians should offer survivors information on ways they can be as healthy as possible, including how they can maintain a healthy weight, get enough exercise, eat healthy food, and quit smoking.
Primary care doctors should consult with the breast cancer treatment team and develop a survivorship care plan that is coordinated by both groups.
Early-stage invasive breast cancer follow-up care guidelines from the National Comprehensive Cancer Network (NCCN) published in 2022 say:
Survivors should have a medical history and physical exam one to four times per year as needed for five years, and every year after that.
Doctors should ask about any changes in a person’s family history of cancer and offer a referral to genetic counseling if needed.
Doctors should monitor survivors for symptoms of lymphedema and offer a referral to a lymphedema specialist if needed.
Survivors should have a mammogram every year; a mammogram isn’t needed on a reconstructed breast.
Survivors should have heart function testing as needed.
Doctors should prescribe blood and imaging tests for someone who has signs or symptoms of a metastatic recurrence.
Doctors should tell people taking hormonal therapy to take the full course of the medicine.
Women taking tamoxifen should have an annual gynecologic exam.
People taking an aromatase inhibitor or who are post-menopausal should have bone density testing.
Doctors should offer survivors information on ways they can be as healthy as possible, including how they can maintain a healthy weight, get enough exercise, eat healthy food, limit alcohol, and quit smoking.
How doctors estimate breast cancer recurrence risk
The risk of recurrence is different for every breast cancer and depends on a number of things, including the characteristics of the cancer and the characteristics of the person who’s been diagnosed.
Doctors look at a number of factors when estimating recurrence risk:
cancer stage
cancer size
whether cancer was found in the lymph nodes or not
age at diagnosis
hormone receptor status and HER2 receptor status
treatments received
About the study
Although doctors take breast cancer stage and receptor status into account when estimating the risk of recurrence, these factors usually aren’t considered in follow-up care recommendations. As a result, follow-up care recommendations from the ACS, ASCO, and NCCN are fairly generic.
In this study, the researchers wanted to see if considering stage and receptor status when developing follow-up care recommendations could make follow-up care more personalized and helpful.
The researchers looked at information from nine Alliance for Clinical Trials in Oncology studies that included 8,077 women diagnosed with stage I to stage III breast cancer. The women joined the studies between 1997 and 2013.
Among the women in the studies, whose average age was 54.3 years:
85.5% were white
5.5% were Black
5.6% were Asian or Native Pacific Islander
3.4% were of other races or race was unknown
Of all the breast cancers:
30.3% were stage I
50.2% were stage II
19.5% were stage III
46.7% were smaller than 2 centimeters (cm)
44.8% were between 2 cm and 5 cm in size
8.5% were larger than 5 cm
53.6% were node-negative
30.6% had one to three positive nodes
15.8% had four or more positive nodes
56% were hormone receptor-positive, HER2-negative
14.8% were triple-negative
16.1% were hormone receptor-positive, HER2-positive
13.2% were hormone receptor-negative, HER2-positive
The researchers followed half the women for more than 4.68 years and the other half for shorter periods of time.
The researchers looked at how much time passed from the date of diagnosis to the date of the first breast cancer recurrence, up to five years after diagnosis.
Overall, 10% of the women had a recurrence within five years of diagnosis. Nearly 70% of the recurrences included a distant recurrence:
61% of the recurrences were only distant recurrence
8.2% of the recurrences included both local and distant recurrence
30.8% of the recurrences were local recurrence
The time to the first recurrence was different depending on receptor status:
75% of recurrences of triple-negative breast cancers developed within 1.92 years of diagnosis
75% of recurrences of hormone receptor-positive, HER2-positive breast cancers developed within 3.05 years of diagnosis
75% of recurrences of hormone receptor-positive, HER2-negative breast cancers developed within 2.65 years of diagnosis
75% of recurrences of hormone receptor-negative, HER2-positive breast cancers developed within 2.79 years of diagnosis
These differences were statistically significant, which means they were likely due to the difference in receptor status and not just because of chance.
Within each receptor group, the stage of the cancer also affected the time to recurrence. This difference also was statistically significant.
The researchers estimated the percentages of breast cancers that would recur by five years after diagnosis by stage.
5.9% of hormone receptor-positive, HER2-negative cancers would recur
9.6% of triple-negative cancers would recur
There were not enough recurrences to estimate five-year recurrence rates for hormone receptor-positive, HER2-positive cancers.
4.6% of hormone receptor-negative, HER2-positive cancers would recur
10.1% of hormone receptor-positive, HER2-negative cancers would recur
13.9% of triple-negative cancers would recur
7.7% of hormone receptor-positive, HER2-positive cancers would recur
9% of hormone receptor-negative, HER2-positive cancers would recur
26.6% of hormone receptor-positive, HER2-negative cancers would recur
45.5% of triple-negative cancers would recur
15.3% of hormone receptor-positive, HER2-positive cancers would recur
23.8% of hormone receptor-negative, HER2-positive cancers would recur
Based on their findings, the researchers drafted follow-up recommendations for the first five years after diagnosis by receptor status and stage.
Stage I: Follow-up visits at nine months and 18 months, and then every year
Stage II: Follow-up visits every nine months
Stage III: Follow-up visits every three months for the first 3.5 years, and then every six months
Stage I: Follow-up visits every six months for the first two years, and then every year
Stage II: Follow-up visits every six months for the first three years, and then every year
Stage III: Follow-up visits every three months
Stage I: Follow-up visits once a year
Stage II: Follow-up visits once a year
Stage III: Follow-up visits every six months
Stage I: Follow-up visits every nine months
Stage II: Follow-up visits every six months for the first four years, and then once a year
Stage III: Follow-up visits every three months for the first three years, and then every six months
“Our findings highlight the need for a more personalized approach to follow-up care for breast cancer survivors,” the researchers wrote. “We have translated our findings into data-driven recommendations for follow‐up. Implementation of risk-stratified guidelines based on our data has the potential to have a strong, positive impact on both survivors and their oncology providers,” they added.
What this means for you
When considering treatments after surgery for early-stage breast cancer, your doctor probably talked to you about your recurrence risk, the cancer characteristics that affect this risk — including stage and receptor status — and how treatments after surgery can help reduce this risk.
But when developing a survivorship care plan to monitor for cancer recurrence and other conditions you might be at higher risk for because of treatments you’ve received, it’s not clear if all doctors consider the breast cancer stage and receptor status.
“This paper is talking about using stage and receptor status to determine follow-up or surveillance protocols, not simply recurrence risk,” explained Brian Wojciechowski, MD, a medical oncologist and Breastcancer.org medical adviser. “They criticize the NCCN for having a ‘one-size fits all’ approach, while noting that the risk of recurrence depends on stage and receptor status and perhaps suggesting that, for example, someone diagnosed with triple-negative breast cancer should have a different follow-up schedule than someone diagnosed with hormone receptor-positive breast cancer.
“So yes, doctors take into account stage and receptor status when figuring the risk of recurrence,” he continued, “but not necessarily when figuring out how patients should be followed-up.”
After you’ve completed the main treatments for early-stage breast cancer, it’s important to focus on what’s most important: your good health. You deserve the best ongoing care so you can live your best life. If you’ve finished breast cancer treatment and your oncologist hasn’t talked to you about a survivorship care plan tailored to your unique needs, it’s a good idea to bring it up at your next appointment.
Here are some topics you may want to discuss with your oncologist:
Ask if the stage and receptor status of the cancer were considered when your follow-up visit schedule was developed.
Ask for a survivorship care plan in writing that explains all the medical issues you need to consider and lists which screening tests you need and when you should have them.
Ask which doctor you should 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 is responsible for.
There’s only one of you and you deserve the best care possible, both during and after cancer treatment. Because survivorship care plans are relatively new, you may have to advocate for yourself to make sure you get a plan in writing.
Listen to The Breastcancer.org Podcast episode featuring Evelyn Robles-Rodriguez, DNP, APN, AOCN, discussing breast cancer survivorship and survivorship care plans.
Learn more about breast cancer survivorship.
— Last updated on May 25, 2023 at 2:02 PM