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Speaking up about being a cancer survivor

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Florida journalist Aleka Leighton.

I was reading a post recently from a newly diagnosed thyroid cancer patient in my online support group. She wrote that she was getting nightmares from reading the stories she saw on the site and, also, that she didn’t want to live with what thyroid cancer means to her now. At that moment, I considered how my own life had changed. One year ago, I was that woman. I was afraid to know, afraid to be informed, afraid to wait, afraid of the doctors, the hospital, the labs, afraid about whether my life was going to change or not. Was I going to be the same after the cancer?

My story dates back to November 2011, when I went to an otolaryngologist because I had an ear infection that my primary doctor tried to treat but that was still causing me discomfort. The doctor thought that it was earwax, so he removed it. But when I was ready to leave, he suggested that he check my nose, mouth and neck "since you're already here." He started to touch my neck and then told the assistant that he felt a nodule in your thyroid. “But don’t worry about it," he told me. "A lot of women have it and it’s very common. You just need to have a neck ultrasound and I’ll see you in three weeks.”

And thus began the rollercoaster ride that included Internet searches at home, consultations with doctors, more research, and some tears.

In January 2012 I met with an endocrinologist, and here is where my story completely changed for the better. The endocrinologist performed the FNA (fine needle aspiration) biopsy and explained to me everything I needed to know - the potential problems, the potential treatments. No more Google searches. No more questions. I was with the right doctor, finally. Just several days after meeting him, he told me I had papillary thyroid cancer. And at that moment, I thought to myself, “You can start crying, or start fighting.”

I chose to fight.

After the RAI and subsequent surgery, you feel tired. You gain weight. You’re moody. Your skin is dry. You’re always worrying about remembering to take a pill that you'll need to take every morning for the rest of your life. It felt like being 13 again - but in the body of a 44-year-old woman. I also at times felt like I knew too much, and thinking about life without a thyroid was scary.

But it hasn't been all bad. My thyroid cancer was found early (something I thank God for every day), and I've gotten much information and support from the organization ThyCa, which my endocrinologist told me about after the surgery. I was forced to find out what life is like without a thyroid (including the changes to your hormones and your mood), but I've benefited from the tips and wisdom of those people online who have been dealing with thyroid cancer issues for much longer. (Doctors, I encourage you to support patient support groups like the Inspire/ThyCa Support Community and to embrace the wisdom of informed patients. We can help you learn and be more prepared as you treat patients.)

More than one year after my surgery, I'm among the many thyroid cancer survivors out there. I'm now active in sharing my story and telling my friends and family to “check your neck," and I thrive on the support I get from various online communities. I'm more educated now, and I always speak up.

Aleka Leighton, a native of Chile, is a journalist who lives with her husband in Miami, FL. She works to create awareness in the Hispanic community about thyroid cancer.

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