Nov. 21, 2024 – Patients and survivors of breast cancer are finding solace on an unlikely platform: the online forum site Reddit.
In the r/breastcancer thread, women share advice, admit their fears and anger, and cheer their advances. Questions about breast reconstruction are common, members swap information about drugs and medications like seasoned pharmacists, and one user even shares a tip on how to get free lasagna.
“Knowing that Reddit users are looking to one another for affirmation and advice speaks to the power of socialization and connection,” said Shannon La Cava, PsyD, director of the Simms/Mann UCLA Center for Integrative Oncology at UCLA Health Jonsson Comprehensive Cancer Center. “Cancer can be very isolating, and finding or building a support network can provide a sense of relief, normalize the experience to feel less alone, give opportunity to learn and develop healthy coping strategies from others, and ultimately lead to a reduction in distress.”
Researchers from the University of Colorado Anschutz Medical Campus in Denver analyzed over 700 posts on the site and found users offer and seek information, with content like advice (22%), affirmation (21%), venting (20%), solidarity (13%), and motivation (11%). Other topics included coping mechanisms (18%), resources (11%), and diagnosis/prognosis (7%).
“What is important about this research is that it keeps the patient voice central to the work by seeking to understand patient perspectives through an existing online platform,” said Emily Ray, MD, a breast medical oncologist at the University of North Carolina Lineberger Comprehensive Cancer Center. “This analysis is one way for cancer researchers and oncologists to keep their ‘ear to the ground’ to better understand the lived experience of patients with cancer.”
Still, while peer support can help patients feel heard and understood, it can be a delicate balance, said Mary Morreale, MD, a clinical psychiatrist and member of the Supportive Oncology Multidisciplinary Team with Karmanos Cancer Institute in Detroit.
For example, well-meaning advice online could unintentionally cause more fears or unhelpful comparisons, especially for patients at differing stages of their treatment journeys. There’s also the risk that some advice found in social groups is not rooted in science.
“Structured peer support groups or programs that offer a framework for these interactions can provide both the safety and encouragement needed, helping people both give and receive support in ways that feel constructive and supportive,” Morreale said.
The Knowns and Unknowns
Many patients and survivors on Reddit also expressed fears and frustrations over unmet emotional and financial concerns. Mari Montesano, a licensed clinical social worker, oncology social worker, and the manager of the Susan G. Komen Breast Care Helpline, said such issues are the main reasons callers contact their helpline.
“I think when someone gets that diagnosis, it's the unknown of what that means,” she said. “Are they going to be able to work? If they can't work, what will happen to their health insurance? How will they pay their mortgage or rent or for food? It’s about educating and informing people of how their insurance works, what their policy looks like, what their out-of-pockets are going to be.”
It’s critical for patients with breast cancer to have a proper support team – which includes a social worker, nurse navigator, and their health care provider – to walk them through any issues or concerns.
“I think most people don't know that they should have a social worker and a nurse navigator that are there to help support them and connect them to resources,” Montesano said. “I think if you don't know to ask for that, then you don't always get that referral.”
Help Is Available
Oncology social workers can help patients and survivors of breast cancer connect to financial aid programs, and answer questions about health insurance, medical leave, and disability leave options through their work or the state, Montesano added.
Emotional concerns of patients and survivors of breast cancer often include cancer recurrence, body image issues after surgeries related to breast cancer, hair loss from chemotherapy, and changes in sexual functioning after removal of the ovaries or endocrine treatments – both of which can also affect intimate relationships and sexual health, said Morreale.
Another unique challenge for patients with breast cancer: going from the person who takes care of everyone, to the one who needs extra support, said Heather Salazar, a breast cancer survivor and CEO of Pink Ribbon Good, a 501(c)(3) nonprofit that provides healthy meals, rides to treatment, and housecleaning essentials for breast and gynecological cancer patients and their families.
“One thing that many people aren’t aware of is that, sadly, it is all too common for people diagnosed with breast cancer to be ‘ghosted’ by some of their close family or friends,” said Salazar. “On the flip side, survivors are often surprised by those who do show up for them. I’ve heard stories about survivors who are ghosted by their best friends but have someone in their virtual workout group that they’ve never met send them care packages.”
Salazar said if you know someone who has been diagnosed with breast cancer, small acts of kindness, such as delivering a meal or helping with laundry, can make a huge difference.
Individual and group therapy sessions can be helpful and provide emotional support for patients with breast cancer and survivors, said Lauren Ramsey, MD, director of breast cancer surgery at John Peter Smith Hospital in Fort Worth, Texas.
“Psycho-oncology therapists are specifically trained to help patients relieve the stress, sadness, or worry associated with cancer and its treatment.”
Surviving and Thriving
For life after treatment, survivorship programs can help improve one’s health outcomes, emotional wellness, and quality of life, Ramsey adds.
Ending treatment is hardly the end of one’s cancer journey, said Carol A. Rosenberg, MD, director of the Myra Rubenstein Weis Living in the Future Cancer Survivorship Program with Endeavor Health in Illinois.
“As explained and highlighted in Reddit, we recognize that many breast cancer survivors experience late or long-term physical, psycho-social, and financial effects of cancer and its treatments,” she said.
Rosenberg's program offers a planning clinic for cancer survivors, research-based protocols to identify the needs and concerns of survivors, and group educational activities for both patients and health care professionals.
The bottom line: social support is key for patients and survivors of breast cancer. And while professional resources are both necessary and critical, sometimes sharing life experiences with other people who “get it” is just what you need.
Survivors on Reddit, in Facebook groups and elsewhere offer everything from tips on products that help ease certain chemotherapy symptoms, to shared experiences with dealing with fears of recurrence. The goal, Salazar said, is to show that “survivors are there for each other to make the road a little bit easier for the ones who come behind them.”
“I say it all the time: The sisterhood in the breast cancer community is like nothing else in the world,” she said. “Anyone diagnosed with breast cancer is immediately part of ‘the club,’ and the support these people selflessly offer each other is unbelievable.”
