Thyroid cancer is very much on the rise. But while it's one of the fastest growing cancers -- up 274 percent since 1997 -- it's still a rare disease. According to the American Cancer Society, 60,220 people in the U.S. will be diagnosed with thyroid cancer this year, and 1,850 won't survive. Young women in their childbearing years are most at risk, though it can affect men, women and children of all ages. However, because thyroid cancer is rare, it's not in the spotlight like other cancers. And the exposure it does get often overlooks some of the real issues that go along with this cancer.
I was diagnosed with metastatic papillary thyroid cancer with a follicular variant when I was 28 years old and it was quite a journey to that point (read my story here). Here are some things that I've learned, and what I feel patients and survivors need to hear:
1) It's not the 'good cancer' -- You've just been diagnosed with thyroid cancer. Your doctor tells you it's the 'good cancer.' That if you're going to get cancer, this is the one to get. This is what the majority of us hear, and it's one of the most derogatory and misleading statements that can be made to someone who has just received a life-changing diagnosis. The reason why we're often deemed 'lucky' to have thyroid cancer is because of the high survival rate. If caught early, the most common types have a five-year survival rate of nearly 100 percent. There are much rarer types and later stages that drop that survival rate down to as low as 7 percent. But no matter which type you have, or when it's caught, no one is lucky to have any kind of cancer. Check out this video by 'Bite Me Cancer' to hear from other survivors about their challenges. We all need to stand up to this ignorance.
2) It's usually not as easy as 'just taking a pill every day' -- Another ignorant statement made by too many doctors. Patients hear about their 'good' cancer and how removing the thyroid is no big deal. You just take a pill and you'll be fine. But the majority of the time, that's not the case. The thyroid is a vital organ, and the body needs thyroid hormones to function properly (Click here to learn about the thyroid and what it does). It often takes a lot of tweaking to get those levels where they need to be, not only to function well but to help prevent recurrence. And sometimes where you need to be to prevent recurrence can bring unwanted symptoms. It can be very complex... for most there is nothing 'easy' about it. Which leads me to...
3) You will have a new normal -- More than likely, you will not go back to feeling exactly the same as you did before your thyroidectomy. It can often take up to a year after surgery and radiation before our bodies fully recover. This study concluded that patients had significantly decreased quality of life, with scores only improving 12-20 years after treatment. You will probably feel like you're all over the place as you get used to hormone replacement, and to the blood levels your doctor will keep you at. Furthermore, getting the necessary hormones through medicines is far different than your body producing them itself. With a thyroid your body can make adjustments when needed, on demand. We no longer have that luxury. Be patient. Don't expect that you'll be back on your feet and feeling good as new right away. Even if your cancer never comes back (which you'll probably worry about every day from now on), you've been left with permanent hypothyroidism from your treatment. Accepting that you now have a lifelong, chronic illness can oftentimes be the hardest part.
4) Embrace your scar -- Yes, I'm vain. When I found out I had cancer, my main worry was the big scar right on the front of my neck. All I could think about was how I'd cover it up after surgery. But then, once it was all over and the bandages came off, I realized that I didn't want to cover it up. People will stare. Even with it almost completely faded away, I still catch people looking at my scar instead of my face when I'm talking to them (Hey buddy! My eyes are up here!). In the beginning when it was more noticeable, I'd sometimes have fun when people stared, telling them I got into a knife fight (and they should see the other b*tch). But mostly when I see someone looking, I just point to my neck and say 'thyroid cancer.'
Your scar tells a story. It's proof of how strong you are. And it can be used as a tool for awareness. Embrace it. And spread the word.
5) You are not alone -- I'm the only person in my family with thyroid cancer. Before I was diagnosed, I never knew anyone who had it. And while my friends and family are an amazing support system for me, they don't understand completely. And I don't expect them to. Unless you've walked this path, there is no way you could possibly know what it's like. But there are other patients and survivors out there who have been down your path. Who understand, and can help you. Check out these amazing resources for more information and support:
ThyCa -- ThyCa has been created and is maintained by thyroid cancer survivors. Since October 1995, they have been developing a network of services that link thyroid cancer survivors and health care professionals around the world.
Light of Life Foundation -- The Light of Life Foundation was established in the spring of 1997 by Joan Shey, a patient herself. The mission of the foundation (a 501(c)(3) non-profit organization) is to improve the quality of life of thyroid cancer patients through continual education of the lay public and the medical community, and by promoting research and development to improve thyroid cancer care.
Being diagnosed with cancer is completely life-changing, and thyroid cancer is no exception. I've learned that it's key to educate yourself about your condition. Do your research, and don't be afraid to ask questions or to stand up for yourself. Ultimately, it's up to you to take charge of your own health and the care you receive.
I'd love to hear about your experience with thyroid cancer. Were you told it was the 'good cancer'? What else do you feel other patients and survivors need to know?