You may be familiar with the long running American television series, “Survivor.” The premise of the show is that each team begins on different tribes. At the end, the real benefits and strength of the team are when the separate tribes join together creating one tribal union. Alliances form and tribes forge through adversity. This is when tribal unity sends all the right messages in breast cancer in my corner of the patient advocate world.
This is familiar to me in the world of breast cancer, breast surgery, and breast reconstruction. As a patient advocate, I see a variety of platforms on social media helping communities affected by breast cancer. I watch these separate entities support specific biology types of breast cancer, gender specific breast cancer, ethnic specific breast cancer communities, wellness and survivorship, and the various choices made in the decision process for treatment and surgery. They run a full spectrum of voices from prevention through diagnosis, treatment, recovery, and survivorship.
Finding Tribal Unity in Breast Cancer
Nothing could be better for the breast cancer community than to find “their tribe” to feel a sense of belonging, familiarity, and the lived experience of others to guide the newly diagnosed through the decision process of care and treatment. It feels comfortable as long as the advice given is open-ended guiding the patient how to move forward.
There are a number of ways to seek this tribal unity on social media. Facebook, Instagram, Twitter, TikTok, LinkedIn, and Pinterest all have a number of groups to search for. After you have searched, begin exploring the group. Feel the “vibe of the tribe.” Do they present information that is evidence based? Using a Google search engine type in the words, “free open-source journals for breast cancer patients”. You will find a number of resources. For breast reconstruction, my go to open access is PRS Global open. For breast surgery specific, Breast 360.org has a host of online resources.
Why look for evidence-based articles in shared comments in these groups? Because it highlights information that has been medically vetted, through scientific research and review, to show success in breast cancer treatment and breast surgery. Personal support is important, too. The lived experience is valuable, but people affected by breast cancer want facts, too.
When Tribal Fraction Sends All the Wrong Messages in Breast Cancer
Sadly, forming separate tribes on social media in breast cancer advocacy happens but should not. It can potentially be detrimental to the entire breast cancer community when there are fractions and judgements made about choices from individual groups that are specific to one choice. The only right choice is the one the patient is comfortable. The only right choice is the one the patient is at peace making after a shared decision-making conversation with their healthcare team.
Shared decision-making is about choice. More importantly, it is about honoring and respecting the final choice patients make in their breast cancer care. This can include treatment options, surgical options like lumpectomy, breast conserving surgery, mastectomy, and breast reconstruction options including tissue reconstruction, implant-based reconstruction or choosing not to reconstruction after mastectomy. Only after a person is presented with all options can they make these choices.
Tribal Partnership in Breast Cancer Can Only Send the Right Message
My work as an advocate is not exclusive. Because I have had breast cancer twice, experienced mental fatigue due to two diagnoses, went through chemotherapy, radiation, and six surgeries, I know that each of these steps required specific support. I found my tribes either through in-person support groups, on social media, or by forming my tribe of breast reconstruction resources via the nonprofit Foundation, DIEPCFoundation.org.
But our work is collaborative. When I do not have an answer, I reach out to another tribe who knows specifically about a topic I am not covering. I implore all advocates who work in separate entities to reach out to each other without judgement and without exclusion. In the end, we are forged through our alliances. I feel strongly we must show the global community of those affected by breast cancer that when we demonstrate a united front, we are a formidable tribe. We are here for you and here to help you. Dr. Minas Chrysopoulo speaks about it eloquently in this video.