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My Journey With Thyroid Cancer: Diagnosis to Follow-Up Procedures

My thyroidectomy scar

My thyroidectomy scar

Everything You Need to Know About Thyroid Cancer

I was diagnosed with thyroid cancer in 1999. Little did I know I was about to learn more about the thyroid—and thyroid cancer—than I ever cared to. It has been a long road, and I have learned so much along the way. I hope by sharing my journey with this disease with you, it will help you with yours.

When My Doctor First Suspected Cancer

Back in the fall of 1998, I went for a regular physical examination. My doctor was feeling around my throat when she asked, "Have you ever noticed this lump in your neck?" I replied, "You said something about that last year." So she told me that I needed to go see an ear, nose, and throat specialist (ENT). She said it was probably nothing to worry about, but that I should get it checked out.

It took a couple of months before I got an appointment with the specialist. He was a great doctor, and he examined me thoroughly. He found what he believed was a nodule on my neck, and he told me that he thought I might have thyroid cancer. I just looked at him in disbelief! I think perhaps when you hear the word "cancer" that it feels as if your life stops at that point. I suppose it is the shock, especially when you aren't expecting to hear anything like that.

I was scheduled for some x-rays and sonograms. These tests determined that I had a two nodules in my thyroid gland.

What Is a Thyroid Gland?

Your thyroid is a gland that is located in your neck. It lays against and around your larynx, and is about where your Adam's apple is located (if you are a man). It is shaped somewhat like a butterfly, with the lobes of the thyroid being the butterfly's "wings." The two lobes are connected by the isthmus, which can change in shape and size.

The thyroid gland controls how you feel and how your body functions. It produces hormones that circulate in your blood throughout the rest of your body.

One of the main effects of thyroid hormones is to regulate your body's metabolism. In other words, how your body metabolizes carbohydrate, protein, and fat. This is why some people who have weight problems can attribute the gain or loss to low or high thyroid hormone.

The thyroid hormones also regulate your growth and development; and physical and mental development and function. It also affects your heart rate.

My Thyroid Gland Biopsy

Fine Needle Aspiration

The next step was for me to have a biopsy of the nodule on my thyroid gland. This is called a "fine needle aspiration." I was sent to yet another specialist for this. I laid on a table, and the nurse brought in what appeared to be an extremely huge needle. This was to deaden the area where the biopsy was to take place.

It was a horrible experience! The nurse slowly injected the anesthetic, and I had a really difficult time staying still! The biopsy? It was a piece of cake after that. The doctor simply inserted the needle through the skin into the nodule, and withdrew a bit of it.

It took a week or so to get the results, and they believed that yes, I did have thyroid cancer. I was referred back to the ENT specialist to discuss my options.

What Is Thyroid Cancer?

Thyroid cancer is the most common endocrine cancer. It is defined as a malignant tumor or growth originating within the thyroid gland. It is also called thyroid carcinoma. It is one of the few cancers that has increased in incidence over recent years. More than 48,000 people were newly diagnosed with thyroid cancer in the United States in 2011, and more than 200,000 people were newly diagnosed worldwide in the same year.

Thyroid cancer occurs across all age groups but is more common in people ages 20 to 55. It is more common often in women than men.

The cause of thyroid cancer is unknown. However, you will have a higher chance of getting thyroid cancer if you were exposed to large amounts of radiation during childhood or received radiation treatment for medical problems in the head and neck area at a young age. The cancer may not occur until 20 years or more after the radiation exposure. Most people who have thyroid cancer, however, were never exposed to radiation.

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Thyroid cancer is highly treatable if diagnosed early. Prognosis depends on a number of factors, including:

  • Type of thyroid cancer (there are four types)
  • Size of the tumor
  • Whether the cancer has spread to other parts of the body
  • Your age at the time of diagnosis

I was 39 years old when diagnosed with papillary/follicular thyroid cancer. This puts me in the right age and sex category, and like most people, I was not exposed to radiation when I was young. I guess I was just (un)lucky!

Decision to Have a Thyroidectomy

The ENT told me that it would be best if I had a total thyroidectomy. This is where the whole thyroid gland is removed. Some people only have part of it taken out, but there is always a chance of recurrence. Depending on what was found after surgery, I might have to have radiation.

Of course, he had to tell me about the complications of surgery:

  • Raspy voice (he said I might sound like Demi Moore)
  • Possible loss of voice
  • If they cut in the wrong place, I might not be able to swallow and/or breathe
  • Low calcium levels in the blood, if the parathyroid glands are damaged during the procedure.
  • Infections and bleeding

I have to admit, this list of potential complications scared me a lot. Mostly, I was scared of being put to sleep by the surgery and never waking up. After all, I was only 39, and had big plans for my 40th birthday!

So the next thing I did was get a second opinion. I had another fine needle biopsy, and this time, without the area being deadened. It didn't hurt near as much as the first one did. The results, however, were still the same—and so I decided to go with the surgery.

Removal of My Thyroid Gland

The surgery wasn't as bad as I expected. I arrived at the hospital early in the morning, got into my gown, and was knocked out pretty quickly. I don't remember what happened at all! However, when I did awaken, I was in pretty bad pain and was receiving morphine through an IV. When I reached up to my neck, I found the wound covered with steri-strips.

The doctor came in,and told me that they had found papillary cancer with a follicular variant. They removed the entire thyroid, in addition to one of my parathyroid glands. Everything looked good, and I should be out of the hospital the next day.

(As an aside to this story... I was released the next day, and I had a good afternoon. I woke up in the night coughing, and I couldn't breathe. A friend took me to the emergency room, where I was seen by a doctor. He said I looked fine, and sent me home. Two days later I was back in the ER, and learned I had pneumonia! I spent the next 4 days in the hospital recovering from that.)

Four Types of Thyroid Cancer

There are four types of thyroid cancer:

  • Papillary thyroid cancer is the most common type of thyroid cancer. It accounts for about 80% of all thyroid cancers. It generally grows very slowly, but can often spread to lymph nodes in the neck. It also can spread elsewhere in the body.
  • Follicular thyroid cancer accounts for about 10-15% of all thyroid cancers. Follicular thyroid cancers usually do not spread to the lymph nodes, but in some cases can spread to other parts of the body, such as the lungs or bones.
  • Medullary thyroid cancer accounts for 5-7% of all thyroid cancers. Medullary thyroid cancer is easier to treat and control if found before it spreads to other parts of the body. Sometimes it spreads before a thyroid nodule is discovered. The treatment for this type of thyroid cancer is surgery. The long-term prognosis is not as positive as it is for papillary or follicular thyroid cancer.
  • Anaplastic thyroid carcinoma is the least common type of thyroid cancer. It accounts for only 1-2% of all thyroid cancers. It is seen more commonly in people over age 60 than in younger people. In many people, it is seen together with other forms of thyroid cancer. This rarest type of thyroid cancer is difficult to control and treat because it is very aggressive and can spread rapidly within the neck and to other parts of the body.

What Are Radioactive Iodine Ablation Treatments?

Some people, like me, receive radioactive iodine treatments after surgery. This treatment is also known as Radioiodine, I-131, or RAI. The treatment gets rid of any remaining cancer cells or tissue that the surgeon might have missed or that are located in other parts of the body. This is a painless but very strange procedure.

If RAI is part of your treatment, you will probably receive it between three and six weeks after your surgery. You will swallow the RAI in the form of either one or more capsules (pills) or a liquid. RAI works because the thyroid gland needs iodine and absorbs it from the bloodstream. When you swallow the RAI (the isotope I-131), it goes through your bloodstream to your thyroid tissue. The radiation destroys thyroid cells, both cancerous and normal thyroid cells, with minimal effects on the rest of your body.

The dosage of I-131 used for ablation is measured in millicuries. The dose for remnant ablation may range from 30 millicuries to 100 millicuries. Sometimes the dose is higher (100 to 200 millicuries) for people with more extensive disease. The first time I had RAI treatments, the dosage of I-131 was 100 millicuries. The second time, it was 150.


Radioactive Iodine Ablation Procedure

This type of radiation treatment is different than most, because it is internal. It is also one of the strangest things I have ever experienced.

Most people have this done in the hospital, mainly because you are highly radiated. When you enter the hospital, you have to give up your clothes, and wear a hospital gown and slippers. Everything in your hospital room is covered with plastic wrap, including the toilet seat, faucets, telephone, and flooring.

Someone from the Nuclear Medicine department will bring you your dosage. It is usually in a metal box, and only you can touch it. Swallow the dosage, and then be prepared to wait it out. You will probably not feel different, although you will have a slight metallic taste in your mouth.

When the staff brings you a meal, it is on disposable plates. It will probably be a low iodine diet, as iodine can mess up your RAI. After eating, you'll throw everything away yourself (no hospital staff to wait on you!). I had two bags in my room, with radiation markings on them.

Now, the best way to get out of the hospital is to take a lot of showers. And I mean a lot! Every hour or so, hop in and wash off. Any radioactive iodine that is not sucked up by the cancer or thyroid cells will be lost through perspiration. Your goal is to get it out of your system so you can go home.

Potential Side Effects

  • A burning sensation or tenderness in the neck area
  • Nausea and upset stomach
  • Swelling and tenderness of the salivary glands
  • Taste changes (usually temporary)
  • Dry mouth
  • Reduction in tear production

I always believed, upon leaving my hospital room, that I must glow in the dark from all of the radiation!

Precautions to Take After RAI

After you leave the hospital, there are precautions you have to take in order to not expose others to your radiation:

  • You must stay at least three feet away from everyone for approximately five days. This includes your pets. And do not kiss anyone!
  • If you are in the car or on public transportation, do not sit next to anyone for more than an hour. If you are in the car, sit in the back, behind the passengers seat.
  • You should sleep in a separate room, or at least 6 feet away from any other person. Use separate bath towels and launder these and all of your other clothing separately for one week.
  • Use separate eating utensils or disposable eating utensils. Wash eating utensils separately for one week. Do not prepare food for others.
  • Rinse the sink and tub thoroughly after using them. Shower every day.
  • Wash your hands with soap and plenty of water every time you use the toilet. Flush the toilet each time you use it, and wash the toilet seat.
  • If you need to travel by plane or other transportation after receiving RAI, carry an information card or letter of explanation from your doctor. This is because radiation detection devices used at airports, bus and train stations, trash collection sites, and some international borders and in some buildings may detect low radiation levels. Carry the card or letter with you for at least three months after receiving RAI.

Follow-Up to RAI Treatment

Between two and ten days after your RAI treatment, you will have a whole body scan, which is also known as an I-131 scan. You will have this scan in the nuclear medicine department of the hospital or community radiology center. It usually takes between 30 minutes and an hour.

Fully clothed, you'll lie still on a narrow bed that moves slowly through a scanner. Some of the newer scanners actually do the moving, and the bed lies still. A monitor will be above your head showing your progress. Unfortunately, since you cannot move, it's tough to see what is happening.

Normally, you won't know the results of your scan until your next doctor's appointment. However, in some centers, a nuclear medicine doctor will meet with you afterwards for the result.

About 98% of people who have the scan show a small amount of thyroid tissue. This is because it is difficult for surgeons to remove every tiny bit of your thyroid. If you see "normal uptake in the neck" in your results, this is what they are referring to. The scan will also show uptake in your salivary glands and digestive tract and will also provide information about whether and where there is any remaining thyroid cancer.



Thyroid Hormone Replacement Therapy

Since your thyroid was removed surgically, you will receive thyroid hormone replacement therapy (levothyroxine) for the rest of your life. You will have to have blood tests periodically to determine your TSH, T3 and T4 levels. This is what your dosage will be based on.

Levothyroxine comes as a tablet to take by mouth. It usually is taken once a day on an empty stomach, about an hour before breakfast.

There are a lot of drugs that you cannot take at the same time as Levothyroxine. Some of these are antacids and iron tablets. Your doctor or pharmacist will tell you how to take all of your medicines.

After you take this medication for awhile, you'll learn what dosage makes you feel "normal", and also when to tell your doctor you need a change. Hair loss, cold intolerance and unexplained weight gain are all signals that your dosage might need to be changed.

Unfortunately, not all doctors will listen when you feel you need a change. If you've had thyroid cancer, your TSH level is different than someone who has thyroid disease. It's best to find a doctor who specializes in thyroid cancer, as he/she will have a better understanding of what you require.

Follow-Up Procedures: Blood Tests and Scans

Blood Tests

During the first year after your treatment, your physician will order blood tests several times to make sure you are on the right dosage of levothyroxine. Blood testing also helps monitor for persistent or recurrent cancer. Make certain to ask for your results, and keep track of them in a notebook.

After the first year, your doctor may order blood tests less often. Make sure to ask for one on your own if you are feeling tired, cold, or are gaining weight. This is a good indicator that you need to either raise or lower your dosage.

You will have these blood tests for the rest of your life, so get used to it!

The prognosis for any person with a recurrence is better if it is discovered early. This is why life-long monitoring is important.

Other Tests and Scans

Your doctor will determine what other types of procedures you will need for the rest of your life. These tests and scans include:

  • Physical neck examination, including feeling the thyroid bed area. Typically, this is done every three to six months for the first two years, and at least once a year thereafter.
  • Neck ultrasound
  • RAI Whole Body Scan (for people with papillary or follicular thyroid cancer, or a variant. ) This is somewhat like the ablation, but you don't have to stay in the hospital. First, you'll quit taking your levothyroxine for about six weeks. By the time you start feeling really crummy, you'll go to the Nuclear Medicine department at your hospital, where you'll receive a dosage of radioactive iodine. Three to four days later, you'll report back to the hospital for the scan. Keep in mind that you will have to stay away from others during this time.
  • CT scan, particularly of the head and neck and/or the chest.
  • MRI of the head and neck and/or the chest.
  • PET/CT scan
  • Chest X-ray - normally for low-risk patients whose initial cancer was treated via a lobectomy.

Make certain you get the results from all tests, and write them in your notebook. You will be surprised how often you refer back to them.

Thyroid Cancer: A Life-Long Journey

It has been 15 years since I was initially diagnosed with thyroid cancer. For the most part, I am doing fine. My last whole body scan was done in 2005. I was supposed to have one the next year but lost my insurance and couldn't afford it.

I do have blood tests every six months or so, mainly to get my levothyroxine prescription renewed. Almost every time, it has to be adjusted. Sometimes I have to fight with the doctors about it, when I'm not feeling "just right." It's just one of those things you have to live with... and I'm thankful every day that I have that opportunity!

In late 2013, my primary care physician ordered a whole body PET/CT scan, that showed possible cancerous cells in the thyroid bed. A follow-up CAT scan of just the neck area did not detect any abnormalities. However, there was a lesion on one of my tonsils, and I'm now following up on this. When you've had radiation of any type (especially external beam radiation), it's possible for it to cause cancer in other places approximately 20 years later.

As of May 2014, it looks as if the lesion is gone on my tonsils. This is good, because the only way to learn if you have cancer in your tonsils is to have them removed. This is not a good surgery when you are an adult! After 3 visits to have it checked out, I'm now free to go on my way for another year.

As for the possible cancer cells in my thyroid bed, I'm still working on that. The doctor wants a re-check in six months. When I get a clear go-ahead, or have more tests or treatments, I'll let you know.

Additional Resources

If you, or someone you know, has been diagnosed with thyroid disease, you'll need as much information as you can find! Here are some additional resources to help you on your journey:

  • Thyroid Cancer Survivors Organization
    This organization has a great deal of information on all types of thyroid cancer, and what to expect before and after treatment. They also have a yearly survivors conference. I attended one year, and learned much more than my doctor - or any book -
  • American Thyroid Association
    More indepth information and up-to-date clinical information on the types and treatment of thyroid cancer. A good place to start if you are looking for a thyroid cancer specialist!

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Questions & Answers

Question: My daughter had her cancerous thyroid removed in August. Allison is 23 and is now having unexplained anger, mood swings, and fatigue. Is that normal? She's also left her husband.

Answer: It might be a complication from her thyroidectomy. Her TSH levels may be out of whack. I suggest she make an appointment with her doctor to have her levels checked. Please make sure she tells her doctor about all of her symptoms so they can be addressed.

Question: What's the chance of gaining weight? I'm 30 and having my right side taken out due to thyroid cancer.

Answer: The thyroid is one of the organs that can affect weight loss or gain, so without it, you'll need thyroid replacement therapy. A doctor will check your hormone levels fairly frequently. If you begin gaining weight, your levels are too low. If you lose weight, they are too high. It will take a bit of tweaking to get the levels right, so hang in there!

Thank you for reading about my journey!

Joanie on November 12, 2016:

HI! I was just diagnosed with papillary thyroid cancer this week, and am just starting to try to find out information. My experience with diagnosis was very similar to yours. I know I need surgery to remove my thyroid, and then take the radioactive iodine pills. Just don't have anything scheduled yet. Your experience is very helpful. I'm nervous, but hopeful that everything will turn out okay. Thanks for sharing your experiences.

Country Sunshine (author) from Texas on August 05, 2015:

I hope all goes well with you, Chanel! Let me know how it turns out!

Country Sunshine (author) from Texas on June 22, 2015:

I hope it all works out well for you, Laura! The initial shock of being diagnosed is the worst part. It can only get better from there!

Laura on June 21, 2015:

Thank you for sharing all the information. I've been diagnosed with papillary carcinoma at the end of april 2015 and have had a total thyroidectomy two weeks ago. I hope you're feeling better and I really want to thank you for sharing your experience.

Country Sunshine (author) from Texas on May 17, 2014:

@jenny-gibbons-906: Jenny, how are you doing, now that you had the RAI? Please post here to let me know how your treatments are progressing!

gottaloveit2 on March 12, 2014:

I'm totally impressed with the vast amount of information you packed into this one article. I'll bet you've save a few lives by writing of your own experience. Amazing article.

jenny-gibbons-906 on February 01, 2014:

Thanks for sharing so many details. I had a total thyroidectomy for papillary carcinoma on Dec. 18th. I am scheduled to have my RAI this Wednesday, Feb. 5th. I am receiving 100 millicuries. I had 9 lymph nodes positive so I am anxious to see results of my body scan after the treatment. Praying this will all be behind me soon. Have a blessed week. Jenny

Country Sunshine (author) from Texas on January 30, 2014:

@LaraineRoses: I don't think many people realize how much a thyroid does for the body. Yes, you can easily die when one quits functioning. So glad to hear it was caught in the nick of time! My dosage is currently .137 (down from .15 a couple of months ago). I too have problems with small veins. It's the worst part now... they have to dig for them, and quite frankly, it hurts! Glad to know that you are still alive and kicking. Hang in there!

Country Sunshine (author) from Texas on January 30, 2014:

@MariannesWhims: Thank you! Luckily, my world is always full of sunshine. This is just a bump in the road. :-)

Country Sunshine (author) from Texas on January 30, 2014:

@MarcellaCarlton: I wish I had known all of these things when I was diagnosed! Having knowledge gives you power, especially when undergoing scary circumstances! Thank you so much for the visit and comment. Much appreciated!

katiecolette on January 30, 2014:

Sorry to hear that you will have to be on thyroid hormone replacement therapy for the rest of your life but glad you are doing well. Thanks for sharing this very personal experience.

MarcellaCarlton on January 30, 2014:

This is a great lens for people experiencing thyroid problems. May God bless you for using your illness to enlighten others to an ever growing challenge.

Laraine Sims from Lake Country, B.C. on January 29, 2014:

A most interesting account! I am one of the ones who lost my thyroid due to radiation exposure. I almost died before my doctor found out was wrong with me. It was 23 years ago when I was diagnosed with severe hypothyroidism and as you mentioned every 3 months I still have to have a blood test (that is the worst as my veins are not easily found.) Although I know more doctors are aware of the symptoms of thyroid problems these days, I truly believe that many still don't have a clue. Visiting care homes on a regular basis over the past two years has convinced me