The patients that Breast Cancer Awareness Month forgot

Updated: Oct 11, 2022

Since 1985, October has been Breast Cancer Awareness Month (BCAM). One of the most famous and successful awareness campaigns in history, “Pinktober” has inspired countless people to get mammograms, saving countless lives.

But because BCAM tends to be focused on preventing and beating the condition, it overlooks a major category of patients: those with metastatic breast cancer.

In a thought-provoking article, sociologist and metastatic breast cancer patient Rachel Kraus writes about these patients that BCAM forgets.

Metastatic breast cancer occurs when a patient’s cancer has spread beyond the breast and the lymph nodes close to it, to other parts of the body. It’s also called stage 4 (sometimes written “stage IV”) breast cancer.

As with other stages of breast cancer, men can also have stage 4 breast cancer.

Metastatic breast cancer can come from a recurrence of previously treated breast cancer or be discovered when a patient’s breast cancer is detected for the first time.

Kraus reports that around 30% of breast cancer patients have stage 4 breast cancer, which kills 44,000 people a year in the United States alone.

Around 22-28% of people diagnosed with metastatic breast cancer will survive more than 5 years. As this information page points out, everyone is different and there are many factors that can contribute to survival rate. But all metastatic breast cancer patients will need to continue treatment all their life.

Metastatic breast cancer doesn’t really fit the common branding of BCAM. These patients aren’t fighting to prevent or beat cancer, but to manage it. In many cases, they aren’t just focusing on fighting, but also on the end of their lives. BCAM’s message seems to be one of relentless strength and positivity, and many stage 4 breast cancer patients don’t see their condition this way.

Kraus herself has had stage 4 breast cancer since 2009. Her sociology background and personal experiences led her to wonder how fellow metastatic breast cancer patients feel about BCAM.

She surveyed 310 women with metastatic breast cancer and conducted in-depth interviews with 33 of them.

Here are some highlights of what she discovered from a majority of respondents:

● Most respondents felt that BCAM seems to ignore stage 4 breast cancer.

● Most respondents don’t feel that the pink ribbon represents them.

(This mentality is what’s inspired the organization METAvivor to create a ribbon specifically for metastatic breast cancer.)

● Respondents also feel that for a majority of participants, BCAM is more about selling something than it truly is about cancer awareness.

● Many respondents said they don’t like the term “survivor”, since in their case, no matter how long they live, they won’t survive their cancer. Instead, they prefer terms like “patient” or “a person who has cancer.”

● For most respondents, BCAM seems to make breast cancer seem less serious than it can be.

This last point is understandable from both sides. The respondents know firsthand the realities of their condition, and it’s likely that many had no idea of the seriousness of stage 4 breast cancer before their diagnosis.

But on the other hand, would BCAM be so successful in encouraging people to get mammograms if the public was more afraid of what lies at the other side? Any cancer diagnosis is terrifying but understanding that breast cancer is most often treatable and curable is far better incentive than to think of possibly getting bad news that stays bad.

Fortunately, Kraus reports that she has started to see some groups, including the famous Susan G. Komen organization, offer resources and information specifically geared towards stage 4 breast cancer. She’s even seen metastatic breast cancer bracelets become available in her cancer center’s gift shop.

Hopefully, this improvement and representation will continue - as will research into finding a true cure. In the meantime, Kraus’s article is a helpful and insightful read for healthcare providers and organizations, as well as friends and families of someone with stage 4 breast cancer.

Contact Our Writer – Alysa Salzberg