Thanks to widespread breast cancer awareness campaigns, it feels like everyone knows about the prevalence and seriousness of this disease, which affects over 260,000 women and 2,500 men each year. But while we are more aware of breast cancer and its impact than ever before, it can still be shocking, overwhelming, confusing and lonely when you receive a breast cancer diagnosis, no matter who you are. Here is what six different breast cancer survivors have learned through their battle with cancer.
What’s the best way to face this disease? And what should you know going in? We talked to men and women who have survived their diagnosis and come out the other side. What these breast cancer survivors have to say ranges from the extremely practical to the philosophical, but everything they want to pass on could be helpful and important to anyone affected by the disease.
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Utilize your oncology nurse navigator
Dennis Kiem was diagnosed with breast cancer five years ago when he noticed a strange scab and lump on his chest. First and foremost, he wants to spread the message that men can get breast cancer, too — and that guys can check themselves (and/or have a partner check for them) so that it’s caught earlier.
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But Dennis also has a piece of advice about something that made his experience significantly better: oncology nurse navigators (ONNs). These health-care professionals are there to offer extra support — from helping you schedule appointments to providing education and coordinating care.
“They’re very helpful people, especially if you’re single or don’t have family or other support,” Dennis said. “They give expert help, but they’re also someone who will just give you a call and see how you’re doing. If you need mental health resources, or if you need help cleaning your house — mine got me lined up with a donated cleaning service, and my house got a once-over before I did my chemo. It’s someone to keep track of you from the 10,000 feet level.”
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Care for your mental health, too
Tiffany Berkenens found a lump at age 38 that doctors said could have been growing for seven or eight years. Like Dennis, she stresses that self-exams, especially for younger women, are her biggest piece of advice. For those who have already been diagnosed, though, she has a strong message about caring for your mental health.
“I’m a very active person, so it was hard for me to allow myself patience and grace in my healing,” she said. “Listening to my body during my treatment and knowing what it can and can’t do — it was so important to take care of my mental and emotional health.”
Engaging in meditation and mindfulness helped her keep emotionally healthy, while exercise — even just walking — helped her mental health, too.
Go to a support group before you need support
Kathleen Kimble had breast cancer surgery in 2002. While her medical team was helpful with her treatment, she was lost when it came to the details, especially about what to do after surgery was over.
“My personal best tip for all patients pre-surgery is this: Go to a breast cancer support group a few times before surgery, even if you’re not remotely needing support yet,” she said. “They are the best source of info. No one — I repeat, no one — in my surgeon’s office, including the surgeon, ever said anything about what happens after surgery. No info on Softee clothing garments, mastectomy clothes or if/how/where to buy a prosthesis.”
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You have power over your treatment plan
Nurse Danielle Lambright was diagnosed with Stage 3 breast cancer seven years ago and then found out four years ago that she had metastatic breast cancer. During her first treatment, she followed her doctor’s plan without question. But the second time, she decided to take more control over what was happening to her body — doing her own research, changing aspects of her lifestyle, requesting certain tests — and only then did she begin to thrive.
“The one thing that I wished is that I knew I had more control,” she said. “They said, ‘You have to do A-B-C,’ and I didn’t realize that I had actual power in my treatment.”
Be your own best advocate
Dr. Kelly Shanahan was first diagnosed with early-stage breast cancer in 2008. Ten years later, the cancer has metastasized to her bones. While she can no longer practice medicine, she’s an advocate for people with metastasized breast cancer and a volunteer for METAVivor, a non-profit that focuses specifically on metastasized breast cancer research.
Her best advice comes from the place of someone who is both a physician and a patient: “Regardless of stage, be your own best advocate,” she said. “Gather your information, get copies of any imaging, pathology, surgery reports, your doctor’s notes. Because you’re the person that cares about you the most. Educate yourself about your disease. So many people are so scared about the word ‘cancer,’ but the more we know, the less there is to be afraid of.”
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Self-care is treatment, too
Laurie Wilson Pace, a BRCA2 gene carrier, was diagnosed with an aggressive form of breast cancer 10 years ago. In the three weeks between her biopsy and surgery, her tumor had tripled in size. Now, looking back, after having her ovaries removed and a double mastectomy, her biggest advice to others is never to put yourself last.
“When you’re diagnosed, you’re not powerless,” she said. “There’s a lot you still have control over with diet and lifestyle changes. Before I was diagnosed, I was living a very careless lifestyle, drinking too much, eating too much red meat, stressing too much and putting myself last. But it turns out you have to take care of your body. I’ve been more selfish since my diagnosis, exercising and eating right, and I truly believe that has kept me well. You can’t be everything to everybody. You have to take time to live healthy.”
It’s going to be OK, it’s just that you might have to redefine ‘OK’
In 2016, Katie Mazurek was diagnosed with aggressive Stage 3 breast cancer that had spread to her lymph nodes — four days after she had started her own business. While getting treatment, she had several serious complications, including a bacterial infection and a blood clot the size of a golf ball in her heart. After all that, she admits that her one piece of advice to others sounds “very weird.”
“My advice is: It’s going to be OK,” she said. “Your life is going to look different and feel different, and you have to grieve the life you are leaving behind you because you can’t go back. But in a way, it’s an opportunity. I recreated my life with the reality of, ‘If I was going to die — and we’re all going to die — I’m going to live the way I want to live.’ To me, it’s a lot better now.
“There were times when I’ve been close to dying, and I had to remind myself I’m still OK. I still have love. I still have things I’m proud of. Life will be OK, even if it looks very, very different from what you had in mind. It’s a huge exercise in self-care to take back what cancer wants to steal from you, but that’s where you get strength and courage and resilience. You have to have the courage to redefine what OK is.”