10 Lessons from My Thyroid

Just when I was starting to get a vision for this blog, life took a little detour.

In May of last year, I went to see my Gynecologist for ye old annual visit. She walked into the room and before even saying hello, her eyes zoomed to my neck. “Oh, my. You have a nodule on your thyroid.” Pulling on gloves, she walked over and began feeling my neck. “Yeah, that’s a big one. You haven’t noticed it? We need to get an ultrasound of that.”

And no, I hadn’t noticed it. I try not to look in the mirror if I can help it. I’ve reached the age where nothing good comes of it.

So I did the ultrasound and the nodule was solid and about 4.6 cm in diameter. The size of a lime. That’s right. L-I-M-E. Not dime. Lime. No, really, I hadn’t noticed it. I’ve got a small fruit growing in my neck and I’ve got NO idea.

My Gyne said, “Well, we better get that biopsied. It’s probably nothing. Only 5% of nodules turn out to be cancer. But we need to be sure. If its benign, they’ll probably just keep an eye on. They won’t remove it unless it’s pressing on your esophagus and making it difficult to swallow.”

I had the biopsy, all the time knowing it was benign and worrying about how I would get them to remove it because I wanted it out. Out, out, OUT.

My Gyne called with the results of the biopsy. “It’s a Hurthle Cell Neoplasm,” she said. “You have to have surgery to remove it. There’s about a 35% chance that it’s cancerous and the only way they can tell is to remove it and do pathology.” She recommended a surgeon and scheduled an appointment.

Huh. This wasn’t exactly going as I’d expected. I googled “Hurthle Cell” and quickly wished I hadn’t. According to one publication, the probability of cancer increased with nodule size. It was 80% for any nodule over 4 cm.

The surgeon my Gyne recommended was an Ear, Nose, and Throat Surgeon. He does 100-150 thyroid surgeries a year. This seems like a decent amount except during the consultation, he repeatedly talked about removing the right lobe of my thyroid. Which was problematic for me since the nodule was on my left lobe. And again, size of a LIME, so pretty damn hard to miss!

I went home and consulted the All Powerful Internet (API). API suggested I might want an endocrine surgeon, someone who specialized in thyroid. I scheduled a second opinion with the Chief of Endocrine Surgery at Duke. She does about 15 thyroid surgeries a week. You do the math. I scheduled the surgery with her.

On July 3, the nodule was removed. One week later, the pathology report came back. It was official. I have Hurthle Cell Carcinoma, a rare form of thyroid cancer.

Now wait. Just wait. Before you tell me, “Thyroid cancer? Well, you’re lucky. That’s highly treatable. If you’ve got to have cancer, thyroid cancer’s the one to have!” Just consult API. Go ahead. Google it. Hurthle Cell Carcinoma. Yeah. That’s right. There’s some scary stuff out there. Metastases. Recurrence. Gulp.

On August 15, the rest of my thyroid was removed. After that, I followed a low iodine diet for a month. The low iodine diet requires you to pretty much make everything from scratch: bread, salad dressing, salsa, mayo–no prepared foods, whatsoever. No egg yolks, only 6 oz. of meat a day, no fish, only kosher salt. I lost 8 lbs. just because I was too lazy to even prepare food.

The diet rids your body of iodine stores in preparation for a body scan that uses radioiodine to light up any remaining thyroid cells in your body. Because thyroid cells love iodine, when you starve them for a month they soak up the radioiodine. The scan shows any metastases. I had none. Whew!

The scan was followed by radioiodine treatment (RAI) in October followed by 3 days of quarantine from my family. The RAI makes you radioactive–the Imagine Dragons song took on a whole new meaning for me–so you can damage the thyroid of other people if you touch them. The purpose of RAI is to kill all remaining thyroid cells in my body.

Since my surgery, I’ve been on a thyroid stimulating hormone (TSH) suppressant dose of Synthroid, a synthetic thyroid hormone I will have to take for the rest of my life.  TSH is produced by the pituitary gland and tells your thyroid to make more hormone. If you don’t have a thyroid, this message could cause any thyroid cells left behind to replicate, which could lead to cancer recurrence. The suppressant dose tricks my pituitary gland — I’ve got tons of thyroid hormones so it doesn’t generate TSH.

So here’s what I’ve learned through this experience.

  1. The thyroid is involved in just about everything. Sleep. Body temperature. Hair, skin, and nail health. Mood. Energy level. Memory. Concentration. Weight. Bowel function. Metabolism.
  2. There is still an awful lot Science doesn’t know about the human body.
  3. Sleep is precious. What I wouldn’t give for just one night of uninterrupted sleep.
  4. Bad genes trump healthy practices. Despite your best efforts to eat healthy, exercise, practice moderation in alcohol consumption, avoid smoking and drugs, etc., you can still get cancer. You still can.
  5. People who say, “Please let me know if there’s anything I can do,” really mean it. They just don’t know what you need. Tell them.
  6. Life may be shorter than you expect. I may not have another 30-40 years on this planet. I might only have 10-15. I might have even less. Stop taking time for granted.
  7. There is still time to eliminate regret. When I examine the life I’ve had, most of my regrets are outside my power to change. The things that are within my power, I’m working on now.
  8. Do what’s important, what you love, now. Now is really the only time you can count on.
  9. Stress reduces your body’s ability to fight and kill defective cells. Your job can kill you. Don’t let it.
  10. Even dying is an adventure.

17 Comments on “10 Lessons from My Thyroid”

  1. burcubozkurt says:

    HI Terri, I am a 24 yo female that was just told that my FNA biopsy was almost all Hurthle – suspicious for Hurthle cell neoplasm. I am going in either for a lobectomy or a thyroidectomy in July – also at Duke. Did Julie Sosa treat you? What were your experiences? Would love to hear!

    • Hi Bucubozkurt. Sorry to hear about your neoplasm. I’ll be praying that yours is not cancer. Julie Sosa WAS my surgeon and I have only the highest regard for her. She’s quite well published and Hurthle cell is a specific research interest of hers. One of her recent papers is pretty much the definitive work regarding prognosis for Hurthle cell compared to other thyroid cancers. Dr. Sosa will take the time to explain the disease in as much detail as you care to know. She responds to email usually within 24 hours and is very compassionate. She’s also a very skilled surgeon. My neoplasm was 4.6 cm and my vocal chords were lying tightly across it. A less experienced surgeon could have easily damaged or cut through my vocal chords leaving me with no voice or a raspy shadow of one. I did my research and truly believe Dr. Sosa is the best at Duke for thyroidectomy. You are in excellent hands, my friend. Please stop back by and let me know how everything turns out. Or email me at trophydaughter@nc.rr.com. Try not to worry!!

  2. So glad you are back and doing ok. What a journey! I have also missed your blog a lot. Take care of yourself!

  3. I’m really glad you’re doing ok! Sounds like you are making the best of this experience; this made me realize I need to start doing that more in my own life. One more thing–I just really loved the bit about the Imagine Dragons song, lol! Hope to see more posts! 🙂

  4. Heather says:

    Haven’t seen a post in a bit! Glad you are ok and back at it. I enjoy reading your blog a lot.

    Sent from my iPhone

  5. Linda G says:

    Terri – I love this post. And I too loved Trophy Daughter and happy to have it back. Your 10 lessons all touched me – the most of all Number 9 – but you probably already know that from our wonderful times we have spent together!!! And you look amazing, btw. Love you so much xoxoxo

  6. Jan K. Smith says:

    Hi Terri – good to hear the whole story – sounds like you have really been thru the sawmill so to speak. Chris is on a similar thyroid Rx for the rest of his life too. His thyroid was damaged when he had radiation for his throat cancer. Do not forget to take it! We did have some issues because he wasn’t diligent but happy to say all seems to be well now. Thanks for filling us in and I am so glad you are better – how unusual to have contracted such a rare cancer. You made me smile when you wrote you were amazed that you had a lemon sized growth in your neck that you were unaware of. You really wonder how that could happen – and that someone who usually examines you elsewhere noticed it first thing! Thank God for doctors who see the ‘whole person’. Hope things with Gerry are OK. Looking forward to more of your writing.

  7. Professor says:

    Hurthle Cell Carcinoma is not normally treated by radioactive iodine (unlike papillary of follicular cancer), so i am not sure why RAI was used.
    All the best i know person who is still alive 40 years after TT for follicular cancer!

    • Hi Professor. Hurthle Cell is a variant of follicular cancer. Unlike papillary and other follicular cancers, it doesn’t always uptake the iodine so RAI may not be as effective. However, since there is a higher rate of metastaces, current guidelines say administer RAI anyway. I was on the low iodine diet for 4 weeks instead of 2 to try and improve uptake. Hope I have similar results as your friend!

  8. Terri, It is so good to hesr from you again. I am sorry about your cancer and lifelong treatment, but you have handled it admirably. I look forward to you getting better and writing some more

  9. Denise Anderson says:

    Terri, thanks so much for your post. I, too, have missed your posts. I’m so glad you’ve been so thorough in researching this issue and that you knew to get a second opinion.

    And you’re right, we can’t take things, including our health and our lives for granted. But we need to do the best we can to keep on keeping on by trying to stay healthy and by keeping in touch with those that are important in our lives.

  10. Anonymous says:

    Terri, you are back! I missed your blogs, love the honest facts, thoroughness and thoughts from your soul,you were brave through this medical issue, you sought knowledgable and experienced caretakers, very smart, keep writing! for selfish reasons I enjoy hearing what you have to say,

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