Coming right on the heels of National Breast Cancer Awareness Month, November was Metastatic Breast Cancer (MBC) Awareness month in Virginia. MBC is when cancer that begins in the breast spreads, or metastasizes, to another organ system and starts causing cancer in a new area. MBC can be “de novo”, when the person’s first breast cancer diagnosis is metastatic disease, or recurrent breast cancer, a second breast cancer diagnosis that is caused when dormant cells from the first cancer reactivate and cause disease again. Recurrent metastatic breast cancer doesn’t get a lot of attention, either in the press or in research. We talk about the importance of early detection, but is that enough when it comes to increasing survival rates? The short answer is no.
What is recurrent breast cancer?
A diagnosis of recurrent breast cancer can pop up locally, in the same breast and area where the initial cancer was diagnosed; regionally, spread beyond the breast to nearby lymph nodes; or distantly, known as metastatic or Stage 4, with cancer beginning to grow in an organ system other than the breast, typically in the liver, bones, lungs, or brain. Common question: if cancer starts to grow in the lungs, for example, doesn’t that make it lung cancer? Not exactly. A recurrent diagnosis of breast cancer that has spread to the lungs, for example, behaves differently and requires a different treatment plan than a primary lung cancer. There are tests that a medical team can run to determine whether a cancer is a recurrence or a second primary cancer.
Signs and symptoms
The signs and symptoms of recurrent breast cancer depend on where the cancer re-emerges. Local recurrent breast cancer would look similar to a first breast cancer diagnosis: lumps in the breast or chest, skin changes, nipple discharge, etc. Regional breast cancer recurrence may cause swelling in lymph nodes under the arm, on the chest, or on the neck. A distant recurrence could feature various symptoms ranging from fatigue, back or hip pain, a persistent cough, unexplained weight loss, severe headaches, etc. If you are a breast cancer survivor and are experiencing new, persistent symptoms, it’s a good idea to check in with your oncologist and discuss your symptoms.
What does the research say?
When we talk about the massive improvement in five-year survival rates in breast cancer, the number that gets left out is how many people had their breast cancer recur in those five years post-diagnosis, when breast cancer is most likely to recur locally. For example, the Virginia Cancer Registry only records primary cancer diagnoses, not recurrent cancers. What we do know is that after five years post-diagnosis, risk of distant recurrence for hormone-receptor-positive breast cancer remains the same until at least year twenty post-diagnosis. For those with this type of breast cancer, risk of distant recurrence is connected to the size of the original tumor at the time of surgery as well as the number of lymph nodes involved. The risk of distant recurrence is the same for those who have lumpectomy plus radiation or a mastectomy. About 40% of women with triple-negative breast cancer, more common in younger women and women of color, will have a recurrence of their cancer within the first five years of diagnosis.
MBC, whether recurrent or de novo, cannot be cured, but it can be treated. We do not know what triggers a cancer to metastasize nor are we able to predict when a cancer will metastasize. The majority will still lose their lives within three years, though that length of time is increasing with improved treatments. This variation depends on where the metastasis is, the cancer subtype, mutations, and what treatments are available, but there is way more that we don’t know about metastatic disease progression than we do know.
Hope on the horizon
One thing that has been kind to women with breast cancer is time. From BreastCancer.org:
“It’s important to know that the women in this analysis were diagnosed up to thirty years ago. Breast cancer treatment has improved dramatically in that time, so women who have been diagnosed more recently will have a lower risk of distant recurrence.” Mammograms and therapies for breast cancer are vastly different than they were thirty years ago, even ten years ago. There are clinical trials underway for a vaccine to prevent recurrence in triple-negative breast cancer. With genomic testing, we are now better able to predict which breast cancers are more likely to recur so providers can be more accurate with treatment plans and hopefully prevent recurrences.
Take Action
What can you do with this information? One, if you are a breast cancer survivor who is worried about recurrence, check out this resource from Living Beyond Breast Cancer, and talk to your doctor about your concerns. There is also currently a bill before Congress to reduce the wait time for people with metastatic breast cancer to become eligible for Medicare and Social Security Disability. To learn more about this bill and how you can get involved with VBCF to support it, visit our advocacy page.
We are also advocates of continued funding for the Department of Defense Breast Cancer Research Program, which has led to significant advances in breast cancer treatment and includes survivor participation on their review board. For more information on metastatic breast cancer, check out MBC Alliance. This blog was suggested by VBCF Board Member Anne Woodward, who lives with metastatic breast cancer. Anne is a community leader for Our MBC Life, “a podcast dedicated to exploring life with metastatic breast cancer from the perspective of the people living with this disease and the experts who partner with [them[ to help make [their] lives better.”
What else would you like to learn about metastatic breast cancer? Let me know at erin@vbcf.org.
