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Pink October: An AI Analysis of Breast Cancer Conversations Online

October marked Breast Cancer Awareness Month — an annual international health campaign organized by major breast cancer charities in the USA to increase awareness and raise funds for research on the causes, prevention, diagnosis, treatment, and cure of breast cancer. Breast cancer is a type of cancer that develops from the breast tissue and may include a lump in the breast, a change in breast shape, dimpling of the skin, fluid from the nipple, a newly inverted nipple, or a red or scaly patch of skin. It is the most common cancer in women after skin cancers and over 2.3 million women have been diagnosed with it globally. Early detection is key for effective treatment and public awareness campaigns play an important role on this front.

In last week’s Health Talk blog, we observed how social media has become the go-to place for people to enquire about health conditions and share their personal experiences. Social media is also where a lot of breast cancer campaigns and organizations share information and raise awareness. This week, we deep-dive into search queries and social media conversations related to breast cancer with the help of our AI tool, Sphere.

Breast cancer-related topics that are trending on search

Many symptoms of breast cancer are ambiguous in nature and common to other less serious conditions. Over the past few months — and particularly in June this year — there was a surge in searches clarifying whether itching could be a sign of breast cancer. This surge may be driven by news articles on possible reasons for nipple itchiness that appeared during this period. In most cases, itching breasts are not an indicator of cancer or any other life-threatening condition. However, there are two uncommon forms of breast cancer — inflammatory breast cancer and Paget’s disease — that are associated with itchy breast tissue.

Searches for the drug Dostarlimab (brand name: Jemperli) have been up over the last few months, with the most searches coming from Massachusetts, New Jersey, North Dakota, South Dakota, and Pennsylvania. There was a significant spike around July 7 which coincides with a news release about an experimental drug trial involving Dostarlimab that showed very promising results. The trial, partially funded by the drugmaker GSK, found that cancer went into remission in every single rectal cancer patient who received this immunotherapy treatment for six months. The drug has FDA approval to treat one form of advanced-stage breast cancer that has grown during or after treatment if no other treatment options are available. This explains why many people searching for breast cancer are also searching for this drug.

There has been a surge of interest in HER2-negative breast cancer, particularly through May and June this year. ‘HER2’ is an abbreviation for human epidermal growth factor receptor 2 and can refer to the HER2 gene or to the protein of the same name that the gene produces. HER2-negative breast cancer occurs when the cancerous cells do not contain high enough levels of the HER2 protein to be considered HER2-positive. Approximately 4 out of 5 breast cancer cases are classified as HER2-negative.

It is believed that over 60% of these HER2-negative breast cancers have some HER2 proteins on their cell surfaces and doctors are now calling these cancers ‘HER2-low.’ These cancers effectively occupy a grey zone between the negative and positive types, and the new classification can determine treatment options. Receiving a HER2-negative diagnosis can leave one fraught with uncertainty because, despite the variety of treatment options, the prognosis can vary. Around the time that this search was surging, scientific reports were released about a drug named Enhertu that has shown great promise in treating HER2-negative breast cancer.

Searches for the oncology drug Enhertu have also been on the rise, with the most number of searches from New Jersey, Connecticut, Massachusetts, Illinois, and Maryland. The searches increased from May 5 onwards and stem from AstraZeneca and Daiichi Sankyo’s announcement that their drug was approved in the U.S. for patients with HER2-positive metastatic breast cancer who have previously received an anti-HER2-based regimen. The largest spike was seen on June 5 and is connected to research presented at the American Society of Clinical Oncology’s Annual Meeting and also published in The New England Journal of Medicine.

The research revealed that, compared with chemotherapy that doctors typically choose for treatment, Enhertu improved both progression-free survival (how long a person lives without their cancer growing) by 50% and reduced the risk of death (regardless of cancer growth) by 36% in patients diagnosed with metastatic HER2-low breast cancer that received previous treatment. Popular news articles were quick to report on these extraordinary findings, with some suggesting that this game-changing clinical trial success could represent a new era of breast cancer treatment that offers targeted therapy for HER2-low patients.

Men make up a small percentage (fewer than 1%) of breast cancer cases but tend to be diagnosed only after the cancer has reached an advanced stage and is harder to treat. This is because of the common misconception that only women can get breast cancer and men don’t get routine mammograms.

Approximately 2,710 men in America are expected to be diagnosed with the disease this year. Some recent news articles featured cases of men who have been diagnosed with breast cancer, so it is likely that this search indicates an increase in public interest on the topic.

Breast cancer conversations on social media

Many women who have undergone mastectomies have chosen to reclaim the post-surgery area (and their sense of self) by getting elaborate, meaningful tattoos. Losing one or both breasts to cancer can bring on complex emotions for some, as the resulting area can be associated with both triumph over the disease and the loss of one’s ideal body or sense of femininity.

Coming to terms with one’s post-mastectomy body can be challenging and traumatic as it is common for these women to experience feelings of detachment from their bodies that now feel foreign to them. These feelings can be amplified by the perpetual fear about their bodies as they fear cancer recurrence. Acquiring this type of tattoo can be a meaningful part of healing and also connect one to a community of women who have opted to do the same thing. Social media has facilitated the display of mastectomy tattoos, with TikTok and Instagram having the majority of posts and dialogue.

Source: Instagram

Searches for American actress Marnie Schulenburg surged in the days following her death on May 17. Best known for her role on the soap opera As the World Turns, as well as her roles on One Life to Live and Blue Bloods, Schulenburg’s passing at only 37 years of age came as a shock to many. Searches for “Marnie Schulenburg breast cancer” were highest in Maryland, Virginia, New Jersey, Colorado, and New Hampshire. Diagnosed with metastatic breast cancer in 2020, she used social media to draw attention to her specific condition (which can be mistaken for mastitis) and to inspire others battling breast cancer.

Two stars of popular U.S. shows have recently gone public with their breast cancer diagnoses, and both of their names have been surging according to Google Trends.

Netflix star Clea Shearer (from the show The Home Edit) shared on Instagram that she has started chemotherapy to treat her breast cancer. Her over 235K followers were made aware of her diagnosis, as well as the variety of upsets (to do with sleep disturbances, anxiety, frustration, and sadness) that came with embarking on a course of chemotherapy. LA star and Dancing With the Stars alum Terra Jolé went public with her breast cancer diagnosis on April 29 and revealed that she planned to have a double mastectomy to address it. Upon making the announcement, many of her friends and fans that make up her over 918K Instagram followers sent messages of support and encouragement to the star.

Source: Instagram

Before her breast cancer diagnosis, Dionne Phillips was well-known for her work as a celebrity lash expert and beauty influencer. Since her diagnosis earlier this year, she has been using her platform of 34.6K Instagram followers to share her treatment journey and raise general awareness about breast cancer to hopefully save other women. She highlights that she had undergone mammograms on a regular basis for many years and yet her cancer was not detected. Her diagnosis was particularly terrifying as this type of breast cancer (invasive ductal carcinoma) commonly spreads into the lymph nodes, making treatment more challenging. Dionne posts about her chemotherapy sessions, has shared her rationale about undergoing a double mastectomy, and talks about supporting Black women, a group that faces disproportionate barriers in accessing screening and care in the U.S.

Women rethink their clothing choices after they have had mastectomies since the surgery can result in the loss of one or both breasts, the reduction of one or both breasts, the loss of one’s nipples, or major changes to the entire area (e.g., loss of tissue in the armpit area or having to adjust to breast implants). Not being able to wear items from one’s wardrobe or encountering challenges when shopping for new clothing can be frustrating, and has prompted some women to share tips and experiences online. Using the hashtags #foobs (which refers to ‘fake boobs after mastectomy’), #foobfashion, #flattie, #flattiefashion, and #flatandfabulous (among others) on TikTok and Instagram, these women are giving practical advice, extending solidarity to others, and approaching a lot of their struggles with humor as they reinterpret fashion to suit their needs and tastes.

Source: Instagram

Our AI tool, Sphere, tells us that social media posts related to breast cancer are dominated by positive and neutral content. 44% of posts are classified as optimistic and 40% as joyful, while 13% of posts are classified as sad. The top three emotions detected from Instagram posts are happiness, affiliation, and affection, which indicates that people are taking to social media to share uplifting and empowering content related to overcoming breast cancer.

The color palette of Instagram posts is in sync with the brand colors associated with breast cancer awareness campaigns — proving that these have, in some ways, been effective.

Colors detected from Instagram posts about breast cancer

While there’s a long way to go to increase awareness about the early detection of breast cancer and make treatment accessible to all, keeping track of social media conversations and search trends can help healthcare providers and pharmaceutical companies better understand and design their communication and outreach initiatives.

For more such insights on healthcare-related topics, visit Quilt Health or write to us at anurag.banerjee@quilt.ai.

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