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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.

13 Responses to “ Speaking up about being a cancer survivor ”

  1. Daniel H Sánchez Says:

    Well written article that describes the emotional and physical challenges faced by cancer patients, that are forced to deal with a scary situation.
    The way she managed to overcome fear and sought information to cure her disease is a good example that most people in her situation should attempt

  2. Fernando Sucre Says:

    I’m very proud of my wife. Also, I hope her story inspire many other people not to be afraid and fight cancer, specially Thyroid cancer.

  3. Maria Eugenia Pardo Says:

    Aleka is a fighter. I’m sure that this article will inspire people to fight, to survive and to believe.

  4. Lucy O Says:

    Very informative. Thank you Aleka, great job!!!

  5. sandi kohler Says:

    I like your article very much and am glad you’ve had the opportunity to write it here. I am also glad you had such good, patient oriented, doctors throughout your care.

    I did not have as good of doctors. It was four years ago. I had no time to do my own research – I thought – although now I know I could have had plenty of time to actually learn or think about it.

    I was treated like it was such a bad thing that I HAD to treat it right then, no research, no alternatives, no real information on aftercare – other then, take out the thyroid, (by a doctor who’d never done a total thyroid removal and took a book home the night before to “figure how to do it”) then, do RAI and just take T4 meds forever, you will be fine.

    I believe that is the type of experiences you found when you were reading ahead of time on Inspire and got scared. Endocrinology, in general, seems to want to treat all thyca patients the same, the ONE method. For many patients, especially those elderly or with other autoimmune diseases, that “one size fits all” treatment does not work. However, they won’t listen.

    Thankfully with Inspire and the amount of patients revealing how their treatment is not working, their voices are being heard. One of the most important lines in your article was asking doctors to go to support groups, listen to patients, pay attention – we are all not the same. Don’t just tell patients “it’s all in their heads…” and go do exercise or take anti-depressants.

    thank you very much.

  6. Gaby Urdaneta Says:

    She showed me that the most important thing during those difficult times was her inner strength, her love for life -and of course- the love and support of the people around her. She takes all with high responsibility and commitment as well with optimism and faith. She maintained us fully informed of her advances daily. Now I learned that sharing every step with us was an important part of her recovery. She decided to face the problem openly and she was rewarded with the support and empathy of every friend and beloved one. She’s just an inspiration!!!

  7. Nancy Ringwood Says:

    A sincere thank you to Aleka for sharing her experience. As another ThyCa survivor it is a great validation…there is so much couching this disease as the “good cancer” no one seems to think there is anything to it. I think it should be called the “invisible cancer” because many suffer in silence and most people are ignorant of the impact is has on us and our families.

  8. Sandy Wolter Says:

    Hello My name is Sandy and I’m a Breast Cancer Survivor now5 years 5 mo cancer free I had a Double Mystic in Feb. 27-08 I also have Systemic Scleroderma PAH & Ra and More That have NO CURE Now 10 years so Diag: in 2004 I’m a Fighter and I’m Fighting for a CURE Life Not Easy But with a Positive Attitude & Hope we all have a Change to Live a better Life (( So to All Fighting Cancer keep up the Fight Thing could Be Worse))) So Please Ladies Get your Mammograms & Pap Test It May Just Save your Life Always Get a Yearly Check Up & Lab Test & if You don’t feel right See your Doctor Don’t Wait Until its to Late <3

  9. Tatiana Says:

    I wonder how often the thyroid gland gets examined at doctor visits? In your case, did your PCP examine your thyroid before you were referred to the ENT? Some of my friends tell me that their doctor has never checked their thyroid. Many of the thyroid cancer patients on the message boards had fairly large nodules when they were first diagnosed. Did they have regular thyroid exams?
    Thank you for sharing your experience.

  10. Laurel Felsenfeld Says:

    I am NOT a cancer “survivor”. I am a cancer warrior because I am in the fight of my life for the rest of my life. I have soft tissue sarcoma cancer and it is never cured, only controlled. There is a lifetime risk of recurrence and metastasis. So its never over and i feel saying survivor is like being up on a life raft, that its passive, that someone or something put my cancer into remission. i prefer a fighting image, as im doing everything i can to be healthy and its a fighting warrior as im living with cancer, not surviving it.

  11. Aleka Leighton Says:

    I want to thank all of you for your words and nice comments. I hope that after reading my story you get inspired and next time you have a doctor appoiment you remember to tell “CHECK MY NECK”.Tatiana no my PCP didnt notice my nodule in fact I had 2, you couldnt notice anything. Thanks again!!

  12. Monica Milla Says:

    Great article! Aleka has been diligently posting to increase awareness among her friends. Hope this information can reach the hispanic community also in such need for information.

  13. Karen Rice Says:

    “An Awakening”

    When I was diagnosed with Breast cancer a few years back, I reacted like most who receive a cancer diagnose; first thing came to mind was a “death sentence”. However, I found out later that it was truly “an awakening” for me. I began questioning God, why would you do this to me? What had I done in life so bad to have this placed upon me? But instead of bemoaning my fate, I decided to look for the positive side of it. There has to be a reason for it all.

    I also realized that I was about to face a new beginning, new hope, do and see more with a whole new prospective on life. When I think of the “gift of life” that was given to me, I know that I will develop and gain strength from all my experiences. After going through all that I did during my breast cancer period, I was left with, what the MD’s called “Neuropatic Pain”, which is severe nerve damage. The pain is usually with you all day; at times worse than others. I was later diagnosed with “Lymphedema”. Of course I just kept smiling and saying to myself, “Oh lucky me”. For a while, I wasn’t happy with the way I looked around my breast area after my first surgery, nor the pain I had to endure each day, but I decided to snap out of it. Even after being diagnosed with another cancer (colon) a few years later. Which totally took me by surprise. I had already had my time with cancer, I thought to myself. Why another one? I even make jokes at times, while crying inside asking, “what am I”, the cancer carrier? But even with the pain I had to endure through each diagnose, and all the struggles I’ve dealt with all my life, I still feel truly blessed. I think about the individuals that are no longer among us. I also realized that there will always be someone worse off than I am. I reminded myself, that I “still have my life”, so who am I to complain.

    One day during one of my surgeries, I experienced something of a miracle, as if I went to the other side, so I felt the compulsion to write it down. I turn that experience into a poem and I called it “Peace”. Writing had become therapy for me. I took that poem, along with many others I had composed during my breast cancer period and placed them into book form. I was blessed enough to have that book published and it’s titled “True Simple Poems of Life, Faith and Survival”. I later had another inspirational children’s book published and I’m working on my third. I’m hoping that anyone who has the opportunity to read my poems, get out of them, what I placed in all of them. My poems are from the heart, as real as any could ever be. With the words and phrases of each poem of statement, I wish to make a positive impact on someone who’s ill or otherwise, where they could develop the strength to embrace life in a whole new way. I never anticipated becoming a writer, I just became one. I truly believe when you survive a horrific tragedy or a horrible disease as cancer, it’s for a reason, “you have a purpose” and I want to live to find find out exactly what that is for me.

    That’s what I’m all about now, inspiration. I would have never become a writer, producing inspirational poems and stories, if I had not gone through all that I did. I’m a true example that you can survive cancer not once, but twice, providing you catch it in time, have faith and allow that faith to direct your path. I’ve not saying all will be easy, but you must believe.

    Karen Rice
    x2 Cancer Survivor/Author
    Houston, Texas


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