The Role of Social Media and Breast Cancer: How Does It Impact Patients?

Abstract

Introduction

Patients are increasingly turning to other sources for their health information. Social media has become mainstream, and the easy access to online communities, health professionals, and shared experiences of other patients has made social media a place where many patients turn to.

Methods

In this qualitative report, 2 patients who have had breast cancer describe the reasons why they use social media, what they perceive the advantages and disadvantages are, and what the impact of social media has been through their cancer treatment and beyond.

Results

The reasons why patients turn to social media are varied. These can include information gathering, peer support, shared experiences, and advocacy. There appear to be advantages and disadvantages; however, overall, the impact seems to be a positive one when used judiciously.

Discussion

It is clear that social media has a role to play in healthcare, whether by providing meaningful social connections, delivery of information, or psychological support. Healthcare professionals perhaps should consider the importance of social media in their practice.

Introduction

Patients are becoming more health aware and actively involved in shared decision-making regarding their treatment. For some, receiving information from their healthcare professionals may be enough; for others, however, getting additional information from other medical sources or peers online is an essential part of their care. It has been reported that up to 80% of internet users searched for health information online [1].

As the most common cancer affecting women worldwide [2], unsurprisingly, breast cancer is one of the most frequently searched cancer topics [3–5]. A breast cancer diagnosis can be overwhelming, and seeking out additional information beyond just what patients are given from their healthcare providers can be both educational and empowering.

However, learning about breast cancer in an ad-hoc way poses certain challenges and limitations for patients. First, it can be difficult to sort through all of the extensive resources available, particularly with the variable quality of the information presented [6, 7]. Additionally, understanding the medical language used to describe cancer diagnosis and treatment can potentially be overwhelming or confusing. With these barriers, many patients have gravitated towards social media as an alternative source for better understanding breast cancer care.

Social Media

Social media is defined as many things, but in essence, it includes any web-based platform that can be used for social interaction. Generally, when we think about social media, we think of platforms such as Facebook (Meta), Instagram, Twitter, TikTok, Snapchat, WeChat, YouTube and to an extent LinkedIn, Pinterest and WhatsApp. Social media is a preferred place to obtain health information due to its easy access, connectedness, and peer support. It has been shown that the use of social media may enhance psychological well-being [8] and it is known that the actions of peers can significantly impact behavioural change [9].

Some of the many draws of social media platforms are that they are easily accessible, free to use, and anonymity can be protected should people wish. As a result, patients can talk more freely about sensitive conditions in their online communities, potentially with fewer barriers than in a similar in-person/non-virtual community. The global reach of social media also means that there is a vast wealth of patient experiences and advice that is shared, and patients have numerous opportunities to find a community well suited to their needs.

It has been shown that patients use social media not to ignore or dismiss the information provided by their healthcare professionals, but to complement it [8]; in addition, the effects of social media use for health-related purposes have been shown to lead to patient empowerment. This can influence how they view their disease and engage with their healthcare providers in their decision-making process.

For this article, two of the co-authors (SL and TC) have shared their experiences with social media as breast cancer survivors and patient advocates. What they describe illustrates the positives as well as the potential downsides of social media and its impact.

Sara Liyanage (Ticking Off Breast Cancer)

I have been active in the cancer community on several social media platforms since 2017 when I set up an online support community for people who are going through breast cancer or navigating life after breast cancer treatment. I use social media to share tips and practical advice, together with signposts to places where someone can access further information and support. I run the online support hub for the Future Dreams Breast Cancer charity, so a lot of the information in my posts relates back to there. Prior to running this online support hub, I ran my own supportive website called Ticking Off Breast Cancer.

Over the years of being active in the breast cancer social media community, I have made a number of observations about the benefits and disadvantages of using social media while going through cancer treatment. These are shared below.

Benefits

Support

The community is not merely made up of cancer patients and people who have had cancer; it is also populated by cancer charities, organisations, health and wellness bloggers, businesses, patient advocates, medics, nurses, cancer specialists, medical facilities, support groups, and carers. This means that there is an endless supply of support for someone who is going through cancer. Given the global nature of the community, someone can post a question or comment at any time of day or night and guarantee that someone, somewhere in the world will reply with comforting words of advice and encouragement.

Connection

Using social media allows you to connect with people who are going through similar things: similar physical, emotional, and cognitive struggles. These people know how it feels to be diagnosed with cancer, the fear associated with waiting for scan results, the fatigue, the feeling when friends disappear in real life, the guilt of being a parent/spouse with cancer, and a whole host of other common feelings. Because of this commonality, it is possible to openly express fears, worries, and anxieties in the knowledge that support and encouragement will be received in return without judgement. It is often said that you can talk to people on social media about things that you cannot discuss with friends and family who have not been there.

Education

With plenty of medics, professionals, charities, and cancer specialists active on social media, there are opportunities to learn about things that really help during and after treatment. The range of educational information is enormous and ranges from things like how to counter common side effects to more specific things about the surgical options for the particular type of surgery that someone is booked in for.

There is information about, among many other things, exercise, diet, stress management, coping with anxiety, lymphoedema, fatigue, surgery, chemotherapy, radiotherapy, and hormone therapy. When the information comes from a trusted and reliable source, it is possible to learn more on social media than what you have been told by your medical team. Given the lack of resources within the NHS, this is an excellent resource for patients (see my note below about the counterpoint to this one).

Disadvantages

Comparisons

Everyone copes with cancer treatment differently and people represent themselves differently on social media. Some people who have cancer post images of them going about their day (or night) not looking ill but looking their best: dressed up for chemo, running a half marathon, or doing something that some cancer patients might find hard to do during treatment.

It can easily be forgotten that what you see on social media is just what that person wants you to see. It is not a true representation of what they are going through or how they are feeling. But for someone going through cancer and in a vulnerable position, it is very easy to forget that social media posts are carefully curated. Someone might be feeling very low (experiencing anxiety, stress, sadness, etc.) and looking different to their usual selves (for example, bald, no eyelashes, no eyebrows, skin rashes, overweight, underweight). When they see a post of someone with a similar diagnosis to them but looking great and doing something fantastic, this can then lead to comparisons and in turn amplify the difficult emotional/mental health issues already being experienced.

Conflict

Social media only allows a short caption – whether Twitter, Instagram, or Facebook. With such a limit on the length of commentary (post or comment), it is possible that some people can misconstrue what is being said. Given what people are going through in the cancer community, there can be a heightened sense of vulnerability, sensitivity, and emotional reactions, and this can lead to conflict.

Additionally, unkind and angry things can be said (in posts and comments) which can cause conflict. Someone going through cancer will be going through all sorts of emotions and feelings including stress, anger, resentment, and frustration. With these emotions, people can sometimes write things that may be upsetting. They are using social media as an outlet for their emotions, and given the lack of personal interaction, it is easy for them to write such things.

Competitiveness

Everyone has a different cancer situation. Some cancers are incurable and some cancers can be removed, resulting in no evidence of disease. Some treatments have harsher side effects than others. Everyone has a different treatment regime, and everyone is affected differently by the treatment. But no matter what someone’s cancer story is – it is terrifying to be diagnosed with cancer and then live under the cloud of fear that the cancer will come back or spread. Everyone’s experience and fears are valid regardless of grade, stage, type of cancer; treatment regime; side effects; or anything else. Sadly, there is a competitive side to social media; for example, some people who do not have chemotherapy can be made to feel that their experience was less valid.

Emotionally Triggering

Being active on social media within the cancer community (whether as someone who posts and comments or merely reads posts) can be emotionally triggering. For example, there are posts about people dying (including someone known to you and people who had a similar diagnosis to you); recurrence and spread of the disease; life-threatening side effects; trauma; and many more topics that are difficult to read about for someone who has or had cancer.

In addition, it is all too easy to become addicted to social media and fall down the “rabbit hole” of social media. Someone picks up their phone for a quick trawl of social media, and before they know it, they have been trawling social media for over an hour. It is a feeling of being sucked in and unable to extract oneself, despite it being emotionally tough to read all the posts.

Incorrect – and Dangerous – Information

As mentioned above, there is an excellent educational element to the cancer social media community. However, this is countered by the prevalence of incorrect and dangerous information from unqualified people. Examples are endless but, for example, some people post about diets that they claim “cure” cancer; people who post about other cancer “cures”; people who post misinformation about conventional cancer treatments and preventative medications; people who post about the use of supplements which can have a counter effect on cancer medication (for example, CBD oil); and much more. It is an unregulated place and anyone can pretty much say anything they want. This is dangerous at any time but particularly when the audience is cancer patients who are emotionally vulnerable.

In my opinion, on balance, social media can most definitely provide more support than discouragement, but for anyone active on social media within the cancer community, it is worth remembering the following.

• 1.Use it carefully and set time limits for your use of it.
• 2.Do not get too invested – dip in and out.
• 3.Be kind and understanding of others.
• 4.Do not take anything too personally.
• 5.Do not compare yourself to others.

Terri Coutee (DiepC Foundation)

The impact of social media on the breast cancer community for those of us who have been diagnosed can have both favourable and unfavourable consequences. I have been diagnosed twice. My first diagnosis occurred in 2002. The treatment plan for me was a lumpectomy. Because I did not get clear margins, I had to have two lumpectomies. This was followed by 18 weeks of chemotherapy and 6 weeks of daily radiation to my left breast.

In 2014, I had a recurrence in my left breast and a new primary in my right breast. The treatment I went through for my second occurrence was a skin-sparing, nipple-sparing double mastectomy. The skin envelope was left by my breast surgeon after a discussion and decision for me to have DIEP flap breast reconstruction. This was performed 7 months after my mastectomy after a great deal of research and finding a microsurgeon to perform this intricate surgery using my own tissue.

Almost immediately following my second diagnosis and DIEP flap, I began utilising social media. I had no idea about the power and outreach it provided until I began sharing a blog I started. The DiepCJourney blog began as a cathartic experience soon after my reconstruction. I soon realised that others, patients and surgeons, connected through various social media platforms. I utilise them all including Twitter, Facebook, Instagram, Pinterest, LinkedIn, YouTube, and my podcast platform.

What I realised was the power of the patient story when told in a way that benefited the patient and healthcare professionals. I was only one story of many. Breast cancer is a disease that is unique in its biology and also how it affects the individual. What became important to me was to be accurate, and evidence based, and to provide the most current and comprehensive information the breast cancer community was seeking. I had first-hand experience. Many others are going to go through this same process that I did. I knew they would need help.

Patients have a variety of treatment options after a breast cancer diagnosis. Decisions must be made with the patient’s personal preference and lifestyle taken into consideration. I realise that the content I share can provide the tools necessary to foster a shared decision-making conversation between the patient and the clinician. This comes with a great responsibility to establish trust within the breast cancer community. Patients seek accurate, scientific-based information. They are savvy consumers and look to trusted sources of information.

I rely on the medical community to provide the latest information on treatment and surgical options for patients. What evidence-based open sources can I utilise for patients to read? As a trained patient advocate, how can I interpret this information and translate the language into digestible content for the patient’s decision process? The ability to privately message patients and healthcare professionals continues to be a great source for me. Attendance at webinars, being invited to be a speaker, and reviewing studies help build trust within the breast cancer community.

The downside of social media is that there are numerous sites that focus on what I often refer to as “diving into drama” or rants and anger towards patients and providers. It is human nature to focus on the bad versus the good. As is often said, “bad news travels fast.” I contend in social media; it is possible to establish trust and confidence by sharing what patients want after being diagnosed with breast cancer.

When patients are overwhelmed with information or feel a particular site does not feel right, I encourage them to leave, take a break, and keep looking until they find something that makes them feel empowered with the information and support provided to make informed decisions about their breast cancer treatment and surgical options. It is incumbent upon us as patient advocates curating content, social media accounts, and online groups to bring together patients and clinicians to improve patient care. We are all learning together for the benefit of the patient.

Discussion

Social media has clear benefits for so many patients who have had cancer. The ability to connect with peers allows learning opportunities by exchanging stories and experiences.

Patients can help direct each other to reliable information, share tips on how to manage emotional and physical stresses, and benefit from shared strategies on how to move forward. It also can create space for emotional and psychological support where exchanging stories and experiences between patients can be extremely useful. We know that patients who undertake self-advocacy behaviours report improved quality of life [10].

The social aspect of social media can lend itself to being a powerful source of information distribution. User-generated content can resonate with people, whether that is a post describing their own experience or sharing information from other sources. Information shared by users with deep connections to other users is often shared widely [11]. A cancer diagnosis can be a lonely and isolating experience, and the community aspect of social media can be beneficial for patients for social, emotional, and network support [8]. The wealth of experiences and stories shared in online communities can improve knowledge while at the same time reducing anxiety surrounding a breast cancer diagnosis [12].

The opportunity to interact with verified healthcare professionals on social media is another benefit, not only for patients but also for healthcare providers. Engaging with online communities has been shown to empower patients to engage better with their healthcare professionals and enable a more equal partnership between patients and care providers [13]. Increasingly, healthcare professionals are realising the power of social media and user accessibility and reach, to disseminate public health messages and information [14–16] and engage patients in academic endeavours.

Social media platforms, especially Facebook (Meta) and Instagram, have also been utilised to recruit patients for research, an activity that traditionally would take a large amount of time and resources [17, 18]. Researchers and academic organisations can now use social media to aid recruitment of participants for research trials, which is especially important for reaching ethnic and racial minorities who are under-represented in bio-medical research [19].

However, as mentioned, there can be downsides to social media. Misinformation and increasing negative emotional burdens are experienced by many who use the platforms [20, 21]. The addictive nature of social media can also be considered to have a negative impact on mental health [22].

Social media, however, is here to stay, and the relationship between social media and the dissemination of healthcare information is only going to grow [23]. As more people continue to seek information online, it is vital that healthcare professionals engage with the various platforms to ensure quality information is shared and patients feel empowered in their healthcare decisions.

Statement of Ethics

Participants have given their written informed consent to participate in this brief report. Ethics approval was not required for this study.

Conflict of Interest Statement

The authors have no conflicts of interest to declare.

Funding Sources

There are no funding sources to be declared.

Author Contributions

Tasha A.K. Gandamihardja, Sara Liyanage, Terri Coutee, Anne W. Peled, and Yazan A. Masannat: conceptualisation (equal); drafting of work (equal); review and editing (equal); final approval (equal); and accountability agreement (equal).

Funding Statement

There are no funding sources to be declared.

Data Availability Statement

There are no data to be declared.