Breast cancer is the second most common cancer in women in the United States, although anyone with breast tissue can develop this disease. Typically diagnosed in women aged 50 and up, it occurs when abnormal cells grow uncontrollably in a person’s breasts.
Getting older is considered a risk factor, which is why the United States Preventive Services Task Force recommends that all women begin getting mammograms every other year at age 40. Your screening needs may differ depending on your personal risk factors — as always, consult with your doctor to determine what’s best for you.
There has been increased awareness in recent years about the importance of screenings, especially for people with certain genetic mutations or a family history of the disease. Like most cancers, breast cancer is most treatable when detected early. Less widely known, however, is what happens after a person is diagnosed with breast cancer — a reality for more than 200,000 Americans each year — as well as how best to navigate the social and emotional dimensions of this life-changing disease.
When it comes to breast cancer, medical providers are there first and foremost to treat patients, explains Allison Hancock, CEO of the Oregon-based nonprofit Breast Friends. Often, “they don’t really have the resources or time to help with emotional aspects of breast cancer,” she tells Flow. And as much as your friends and family may offer support, they can’t fully understand your emotional experience unless they’ve also battled breast cancer.
That’s where breast cancer support groups come in. These communities provide a safe, judgment-free space for patients and survivors to connect with people who get what they’re going through.
What are some other benefits of breast cancer communities, and how can you go about finding one in your area? In honor of Breast Cancer Awareness Month, Flow interviewed multiple advocates from breast cancer organizations about this topic. Here’s what they had to say.
How can breast cancer support groups help patients and survivors?
Battling breast cancer is physically taxing, not to mention financially draining. For many patients, it’s also an isolating journey. Treatments like chemotherapy or surgery — which may cause patients to their hair or breasts or enter menopause early — can be emotionally traumatic. “You live with the sort of collateral damage of treatment and how it impacted you,” Jean Sachs, CEO of the national nonprofit Living Beyond Breast Cancer (LBBC), tells Flow. And then there’s the fear of your cancer recurring — a risk for anyone who’s already had it.
Research indicates that social support may reduce some of the emotional distress related to breast cancer, including anxiety and fear. It can also help patients feel a sense of belonging.
Take it from Stephanie Walker, a volunteer patient advocate with LBBC. When Walker was first undergoing treatment for metastatic breast cancer in her 50s, she didn’t know anybody close to her who had the same disease. She rarely confided in her friends and family about the emotional toll of living with cancer. “We hear all the time, ‘Oh, but you look so good,’ and I hate that,” she tells Flow. “If you had a little window on your chest, and people could really see what you look like on the inside and what you’re going through, it’s a totally different story.”
It wasn’t until years later — when Walker found LBBC and started going to therapy — that she began to open up. She made friends through conferences and virtual support groups, which she found especially cathartic during the height of the COVID-19 pandemic.
As Sachs notes, “not everyone wants to be in a support group.” Other forms of social support, such as webinars, private social media groups, or online discussion boards, can be just as valuable.
Additionally, organizations like LBBC can help patients navigate the financial dimensions of cancer treatment, another common stressor. In one 2020 survey of breast cancer survivors, about 14 percent of respondents said they were having difficulty meeting their medical expenses.
What kinds of topics come up in breast cancer support groups?
Many breast cancer patients turn to support groups to discuss the pros and cons of different treatments, oncologists, or surgeons. Some, like Walker, live in more rural areas and don’t know anyone personally who can offer advice or comfort.
This is especially true for people who need a mastectomy, or a surgery to remove one or both of their breasts. “Sometimes, doctors will say, ‘We’ll do implants and you can have reconstruction, and we can get you to a bigger size,’ but these are conversations that we don’t want to have,” says Hancock, who is also a survivor herself. “We want to hear, what is it like going through it? Is there going to be pain? Just the imagery of losing a breast can be traumatic, and some doctors don’t understand that.”
Both Hancock and Sachs hear from many women who are struggling with intimacy or body-image issues after undergoing chemo or surgery. In fact, patients who’ve finished their primary treatment may feel emotional distress more acutely.
“Often, you’re in fight-or-flight mode as you’re diagnosed and going through treatment, and then the psychological part hits harder when treatment ends,” Sachs explains. This can be a particularly challenging moment for friends and family, who want to celebrate as you’re finally “metabolizing” the trauma you just endured. But talking with people who understand your anguish can help.
And sometimes, it can be refreshing for people to attend breast cancer support groups or conferences and talk about anything but their disease. This diagnosis is life-altering, but it doesn’t have to define you.
Why it’s important to remember that each person’s breast cancer journey is unique
When talking about breast cancer, it’s important to keep in mind that this disease is not monolithic. An older woman who’s battling metastatic breast cancer will be navigating different medical interventions and emotional stressors than, say, someone who was diagnosed with early-stage breast cancer in their 30s. And although breast cancer can affect anyone, certain aggressive subtypes are morecommon in Black women.
That’s why robust education and inclusive support groups are invaluable. “Breast cancer is complicated,” adds Sachs, “and we really believe that when you’re diagnosed with breast cancer, you’ll do better if you understand your disease.”
Some breast cancer patients from marginalized communities encounter additional hurdles as they seek information or treatment. “It’s such a tricky cancer when it comes to LGBTQ communties,” Shawn Reilly, project specialist at the National LGBT Cancer Network, tells Flow. Most breast cancer treatment centers are extremely gendered, which can be a deterrent to trans or gender nonconforming patients. There’s also very little research regarding breast cancer prevalence and treatment in trans people who’ve had hormone replacement therapy.
“We know that LGBTQ+ folks with breast cancer have delayed diagnoses and higher recurrence rates than cis-hetero folks,” adds Reilly. That’s due in large part to “a lack of knowledge on survivorship care plans,” which includes everything from peer support to regular doctor’s visits. For these patients, finding a queer-affirming support group can be especially helpful.
How can I find breast cancer support groups near me?
No matter where you are in your breast cancer journey, connecting with other people in your shoes can help. LBBC offers a number of virtual support groups, discussion boards, and in-person events. The American Cancer Society also has an online directory of cancer support groups and programs that’s searchable by keyword and zip code. And LGBTQ+ people can contact the National LGBT Cancer Network to access queer-inclusive support groups.
Additionally, Hancock recommends reaching out to local breast cancer advocacy groups to learn more about resources in your area. Like Breast Friends, many of these organizations offer support groups and programming for patients, survivors, and their loved ones.
“As women, we’re very independent,” she adds. “We want to do things on our own, and we think, oh, we can get through it.” But if you find yourself wanting community, “don’t be afraid to reach out and seek out that support.”