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Joan Lunden Wants You to Be Your Own Health Care Advocate

Dr. Elizabeth Yuko is the Health Editor at SheKnows. She is a bioethicist and writer specializing in sexual and reproductive health and the intersection of bioethics and popular culture. She is an adjunct professor of ethics at Fordham ...

What Joan Lunden wishes she’d known when she was first diagnosed with breast cancer

After spending years working as a journalist and oftentimes covering health, Joan Lunden was shocked how much she didn’t know about breast cancer when she was first diagnosed.

“I was struck about how a journalist can be wrong about something so important,” Lunden tells SheKnows. “That was my impetus to really be out and center and take a lead role and become an advocate.”

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According to Lunden, less than 15 percent of women diagnosed with breast cancer have a family history, so it’s really something we all have to be aware of.

“I never went through a cancer journey with a friend or family member, and quite honestly, I didn’t have a lot of breast cancer in my family, so I very mistakenly walked through life thinking it wouldn’t affect me,” she says.

When she first started treatment, Lunden says the first thing she asked was whether she’d lose her hair. Now that she’s been through the process, she knows there are far more serious risks from chemotherapy — especially the risk of infection.

Eventually, Lunden started bringing a video camera to each of her appointments, which she calls “the best decision” she’s ever made, adding that the “reaction has been nothing short of extraordinary.” People come up to her after every public appearance letting her know how she has impacted their lives — in some cases, even saving it by passing along crucial accurate health information.

“There’s so much information on the internet and so much contradictory information that comes out that leaves people confused and frustrated,” she says. “For women, starting with prevention, we have to be our own advocate.”

To do this, Lunden encourages doing regular self-exams to “know your normal.” That way, if you’re familiar with her own breast terrain, if something comes up that doesn’t feel right, you’ll know when to go to your doctor. And for women 40 years of age or older, that also means getting yearly mammograms. A top tip from Lunden: As you’re leaving your mammogram appointment, open the calendar on your phone and set a reminder for 11 months in the future to make an appointment for your following year’s mammogram so you don’t forget.

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Lunden says she went back through her own mammogram history after she was diagnosed and noticed she let an entire year go by without getting checked.

“That’s nonchalant,” she says. “You’re rendered nonchalant when you don’t think you’re going to be the one who’s going to get it.”

But she says the good news is today, if breast cancer is caught early enough, you have a 99 percent chance of surviving — but that means keeping up with the self-exams and annual mammograms. And if you are diagnosed, then it’s time to take ownership of your health and start learning about your particular type of cancer and the type of treatment you’ll receive

“If you find out that you’ve got to be on strong chemo, you have to learn about all the things you have to be aware of,” Lunden explains. For example, she says it’s really important to wash your hands all day long and stay away from sick people as well as understanding the risk of infection.

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To help others dealing with breast cancer, Lunden has created At Home With Joan, a website dedicated to all things cancer-related, including everything from everyday tips to stories from survivors and thrivers to a printable guide you can take with you to the doctor to make sure you ask the right questions during your appointments.

 “When I was going through treatment, I didn’t even know the questions to ask,” she adds. “Each step along the way, there was something I didn’t know.” She’s hoping that by sharing her story — as well as the stories of others — more people will be able to become their own health care advocates, armed with accessible and digestible information.

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