Thyroid Cancer — It’s (Not) All “Good”

Even though I have a list of posts I need to write a mile long, I went ahead and let this one cut in line because of its timeliness and importance. I don’t think the others will mind!

September is Thyroid Cancer Awareness Month. Chances are, you know of someone who’s had (or has) thyroid cancer. It’s one of the only cancers that’s actually increasing in numbers in this country. My youngest sister had thyroid cancer and was diagnosed right as she started college. There’s no good time to learn that you have cancer, but right when you’re starting life on your own is particularly devastating.

If you know someone with this type of cancer, you’ll also likely have heard it called “the good cancer.” I have mixed feelings about this. On one hand, it’s much better than being called “the bad cancer.” On the other hand, I think it minimizes what thyroid patients go through. Although the vast majority of patients with thyroid cancer survive and go on to life cancer-free lives, they are also left without thyroids in most cases, and have a lifetime of health issues to manage because of this.

My sister (and I really hope she doesn’t mind me blabbing all this!) had a thyroidectomy, followed by a radioactive iodine treatment, where she was in a hospital room where everything she touched had to be thrown away if it wasn’t covered in a radioactive-proof plastic. There was a huge sign on her door that said “CAUTION: RADIOACTIVE,” which I’m sure didn’t make her feel like a freak at all. She had to stay there until she had either sweat or peed out enough of the radioactivity to be declared safe to mingle with other life forms.

Her surgery left her with a scar across her neck, which has since faded considerably, but when it was fresh was pretty noticeable. People on campus asked her about it, if they were kind enough to not just stare. One guy even asked her if she tried to kill herself.

Yes, with a machete across the throat.

Some of her professors in college were less than understanding about the fact that she had to miss classes and generally felt horrible. One professor didn’t believe her. I’m pretty sure he felt differently after she ripped off the scarf she wore around her neck. At least I hope he did.

Since she had her thyroid removed, she has to take synthetic thyroid hormone on a daily basis. If you didn’t know, the thyroid regulates basically everything in your body. And believe me, if it gets out of whack you can feel so tired that you can barely get out of bed, sweat like a pig in July, or my favorite, “brain fog,” where you basically feel like an idiot incapable of coming up with the simplest of words. It’s like your brain has become detached from your body.

So obviously taking these supplements, and taking the correct dosage, is extremely important. You can imagine, then, how she feels when she has to go off these for several WEEKS before having a body scan, to make sure the cancer is still gone. It’s like someone hijacked part of your life.

Know the symptoms of thyroid cancer you can for look for yourself. Most have to do with the neck or throat:

  • A lump or nodule in the front part of the neck, near the Adam’s apple
  • Sensitivity in the neck area, such as with neckties, scarves, necklaces
  • Hoarseness, changes in the voice
  • Difficulty swallowing, feeling like you’re choking
  • Persistent or chronic cough, not due to allergies or illness
  • Difficulty breathing
  • Pain in the area from the neck to the ears
  • Asymmetry in the thyroid (if it’s big one one side and not on the other)

These are the main symptoms, however more aggressive forms of thyroid cancer can affect neurological function as well. (This type would not be considered the “good cancer.”)

DearThyroid has a great article on thyroid cancer. This site is great because it’s a tell-it-like-it-is source written by thyroid patients, and it’s funny too, which is always a plus.

Mary Shomon is probably the most knowledgeable non-doctor person in the world on thyroid disease. She is a contributor on About.com and has written several books on thyroid-related subjects. If you want to know anything about thyroid disease, start with her!

I was diagnosed with hypothyroidism (underactive thyroid) after Boy #2 was born. I literally felt like I was either dying or crazy or both. I knew something was WRONG with how I felt. It was beyond just “normal tired,” but I was assured (rather condescendingly, I might add), that I was just a working mom with two kids who was busy. After bugging the doctor to the point where I didn’t even care if she thought I was crazy, I convinced her to run tests. And she called later to say that I had the highest TSH levels (the higher the TSH levels, the less active your thyroid is) that she’d ever personally seen. Hmmm, ya think?

So this began my journey through the wonderful world of thyroid. Fortunately, I have not had thyroid cancer, so I don’t have to go through everything my sister did, but I have suffered through the ebbs and flows of thyroid secretion, and finding the right doctor, and right dosage, has been a real challenge. I was also diagnosed with Graves’ disease a few years ago, which means my thyroid produces too much thyroid hormone. I’m still not sure how I can be on both ends of the spectrum at the same time (I also have Hashimoto’s thyroiditis, which is an autoimmune disease that causes hypothyroidism), but I guess all that matters is that they make me feel better. For that I had to have a thyroid ablation, where they basically try to kill your thyroid using radioactive iodine. Fortunately, I didn’t have to stay in the hospital, but I did have to swallow a pill, was told not to sleep or lay next to my children for several days and to flush the toilet twice. Really, those were about all of my instructions. Makes you feel safe, huh? Needless to say, I stayed with a friend who didn’t have kids, just to be safe. And I did flush her toilet twice.

Ooh, and I haven’t even mentioned the weight gain yet. Yeah, that’s fun too. Being hypothyroid slows down your metabolism, not to mention that you’re too dog-tired to exercise anyway, so that you usually gain weight. And since your metabolism is compromised, you have to work twice as hard to get it back off. Obviously there are much worse fates than gaining weight, but it does become a frustrating battle that you know will continue throughout your lifetime. Right now I am at a weight that I never thought I would see, except during my 8th or 9th month of pregnancy. (And I’m currently not doing a darn thing to get that weight off. I’m starting NEXT WEEK, though. Yep, really, I am…)

If you have some of the symptoms of thyroid cancer, please, see a doctor. It’s not a hard one to diagnose, and the sooner you start treatment, the better. And if you’ve experienced unexplained weight gain, fatigue, dry mouth, body temperature fluctuations, or you just don’t feel like yourself, ask a doctor to check your thyroid. They’ll do a physical exam and at least a TSH blood test. However, a more thorough work up will include T3 and T4 tests as well. Mary Shomon explains the different blood tests, and what they test for, here. Thyroid disease is hereditary, so if someone in your family has it, the more likely you are to develop it as well.

Statistics show that out of every 10 people diagnosed with thyroid disease, 7 to 8 are women. Many experts think this is because many of the cases of thyroid disease are caused from an autoimmune condition, which occur more in women than men. So ladies, get yourselves checked out if there is any question in your mind about thyroid disease or cancer. And while you’re waiting for the doctor appointment, check out one of these great books on the subject. I’ve read several of them and have really benefited from their information and advice!

Image found here on sxc.com. The thyroid is called “the butterfly gland” because of it’s shape.
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17 thoughts on “Thyroid Cancer — It’s (Not) All “Good””

  1. Thanks for this Paula!

    I was diagnosed with Hypothyroidism shortly after my first child was born, but it had probably been problematic long before then… and let me tell you you are right on the money about how it effects your day to day life. I have struggled constantly trying to get the right prescription and/or the right dosage and the weight gain and moodiness that went along with it all… so thanks for putting it all into words and helping people understand.

  2. Wow! I didn’t even know there was a thyroid cancer month?!? We get a whole month?!? Do I get presents? Super informative post with a lot of tidbits about the thyroid most people probably had no idea about. That is great! And like you said, even though this probably won’t kill most people, so many people probably feel terrible/crazy and have no idea that there may be a real medical reason for it.
    I am mostly over being scared of the cancer, although sometimes it creeps up on me, but now the worry has shifted to my kids and how this will affect their lives. They will forever have to worry (or at least I will worry for them:) that they will get cancer, and someday their children. DH calls me the “health nazi” (I’m not that bad!?!), but I am trying so hard to cut anything out of my kids lives that could be a trigger. Right now, I am struggling with how I will tell them that I have had cancer. They are at that age where they know death exists, and they worry a lot about when I will die, and they have no idea that I had this disease. I fear that will send them over the edge. These things I never imagined worrying about when I was diagnosed, BUT at least I am here and doing great, so I will deal with it!
    Well, happy thyroid month! I am going to celebrate by getting my TSH tested next week, woot woot!!

  3. You’re so welcome, Jeannette! It’s hard to balance not being a “complainer” with letting people know that yeah, sometimes it really sucks! Hang in there, girl! We’re all in this together!

  4. Thanks for letting me tell your tale, Peg. (Well, I guess I didn’t really ask…but thanks for not being ticked off at me!) I know, it’s hard because you want to do everything you can to protect your kids, but it’s also so overwhelming because carcinogens are EVERYWHERE, and then when you have a family history, you wonder if you should even bother! But it is worth it, I know, and I think just doing your best is all you can do, which I know you’re doing. Tell DH to lay off, huh? 😉 Happy Thyroid Cancer Month! Love you!

  5. There is no “easy” cancer. Anyone who dares to say something so ignorant is entitled to a whack over the head. I too have hyothyroidism. And you are right – getting everything in balance is a bear! Thanks for getting the word out to raise awareness. Such a good big sister 🙂

  6. Thank you for the wonderful insightful blog. All 4 of us Booger and Burps women (sisters and mother) have some form of thyroid craziness…it definately run in our family. I told someone a couple of years ago that we should have a sign on our door THYROID R US!
    The challenge is to do our best to create a healthier and better informed world for our children (or in my case, my grandchildren.)
    Thanks, Dear 🙂

  7. Thanks for the reminder to get mine checked, Paula. Mom and Grandma (her mom) both took the radioactive iodine about 25 years ago or so. Mom tells how odd she felt when the doctor said, ‘wait until I leave the room, then drink this, and oh don’t kiss your kids for a week’ or something like that. So I have grown up suspecting that someday I will also have to take thyroid pills as well. During each pregnancy I was checked and passed. It’s been over three years since I’ve been checked (yeah, I know…), and I am tired all the time. Probably time to make that appointment, huh…

  8. @Peggy, I am also scared about cancer still since we lost my dad “uncle joe” 5 years ago to cancer, I am scared with all the cancer that runs on the Cook side of the family for not only myself but for my kids, they are so young and its heartbreaking thinking that our kids will have to go through with it! I didn’t know that about you and I now know what makes you a strong person I love you all!

  9. Your so right about how they downplay Thyroid Cancer. After my surg. I had to go for three mounths without any synthetic replacement. I remember trying to read to my four year old and not understanding the book and not being able to verbalize what i wanted to say.

  10. My 19 yo sister is fighting recurring thyroid cancer. She has a consult next week at MD anderson followed by her 3rd surgery for a left dissection & possibly radiation. My mom had it too & was fine after her surgery, but Em’s came back with a vengence. Her right neck dissection took nearly 9 hours. It’s nice to know there are others out there going through the same thing with their baby sisters. It’s so hard to watch. This post is perfect!!!!

  11. Good luck to your sister! It is so scary to watch and not be able to do anything. Thanks so much for giving me Em’s blog link! Please keep me posted on her progress! Prayers to you and your sister.

  12. Thank you so much for this very well written post and for being such a great sister! (I was on only, but have 6 screaming, fighting punks who I hear someday will be the best of friends…will believe it when I see it! Lol!)

    I was just diagnosed with thyroid cancer in June 2011, after a partial thyroidectomy for a nodule that biopsy said was “benign,” followed by another surgery to take the rest. Let’s not forget that all of that was discovered only after I fought with several docs that just because my blood work said I was “normal,” I knew something was wrong. Always listen to your body! God bless you!

  13. Thanks for your post! I was just recently diagnosed with TC and I can’t believe how many people, including the nursing staff, downplay this cancer, and it’s very irritating. It’s like I should be thankful that I have the good ”one”…anyway, I have yet to go through the second surgery etc. but your post brightened up my day. Cheers!

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