Saturday, December 18, 2010

Thyroid Cancer Part 2 Reflections and Lessons Learned

In my last post, I shared my story of being diagnosed and treated for thyroid cancer. I thought I would take a minute to reflect on my experience. I have had many friends email or call me because they or a friend had a lump on their thyroid. They are looking for comfort, information, and advice and I hope this blog will help them and anyone else that is looking.


First, to anyone that has found a lump, you can get through this. Medical technology has advanced and thyroid cancer can be accurately detected and treated. Thyroid cancer is one of the most survivable cancers because it can be targeted and killed better than most types of cancer.

Put your trust in God, rally your friends and family. This is a hard thing to go through, but you can and will get through it.


Second, I think it is natural to seek out all the information you can.

There are four types of thyroid cancer. The most common is papillary cancer. The second most common, and the type that I had, is follicular cancer. There are also numerous thyroid disorders. The web is a good place to look for information, although, of course you have to be selective in which sites you look at. You also should verify any information found online with your doctor.

I found a blog by someone with follicular cancer that I found to be very helpful. I also joined a Facebook group called Thyroid Cancer Support Group. There is also a national association for thyroid cancer survivors. They offer support groups, but didn't have one in my area. I think that would have been very helpful.

I'll answer a few questions that I have been asked. A lot of these are answered in more detail in the previous post, Thyroid Cancer Part 1 My Story.

What were your initial symptoms that caused you to be diagnosed?

I went to the doctor for a sinus infection, completely unrelated. When he felt my neck to feel for swollen lymph nodes he noticed a lump that shouldn't have been there.

Did you have a needle biopsy?

Yes. I had a fine needle biopsy. The results were inconclusive. At the time I was told I had less than a 5% chance of having cancer. It was uncomfortable to have a needle stuck into my neck and they have to dig around a little bit, but it was over quickly.

How long were down after surgery?

The surgery wasn't too bad. I actually had it twice - the first time they intended to do a biopsy but removed half of my thyroid once they saw the growths. Then they went in two days later and took out the rest. I was in the hospital overnight for both surgeries, sore and on pain meds for a couple of days after. I believe I had my second surgery on a Friday and went back to work on Monday -- if I had to do it over again, I would probably have given myself another day or two of recovery.

How soon after did the iodine/radioactive treatment happen and how long were you isolated?

Before treatment: I waited 6 weeks for the iodine/radioactive treatment. So I spent those 6 weeks without any thyroid or thyroid medication. I wasn't at all prepared for how hard that was on my body. I worked through almost a month of it and kept calling my surgeon and saying something was wrong. He kept telling me I was fine. I wasn't though, I'd literally come home from work and not even make it past the entry way--I mean I slept in the entry way some nights- and then the next morning I'd drag myself up and do it again. I went on short-term disability for the last 2 weeks before the treatment and through the treatment. When I finally talked to my thyroid doctor he was amazed I'd made it a month. He had been so sure that I didn't have cancer, he didn't know I had it until a month later when a letter from the surgeon's office finally made it across his desk - and I didn't know I was supposed to follow up with him. There are some things they can do to help with the lack of thyroid for those 6 weeks, like thyrogen shots, so maybe it would have been better if I'd had those. I also had to go on an iodine-free diet the last week (or was it two?) before the radioactive iodine treatment. They gave me a list (and not a long one) of items I could eat and that's all I ate. I've since found some pretty good websites with recipes and stuff that would have made the diet a lot more bearable.

Iodine/radioactive treatment: I was completely isolated for 5 days. I really think they should hospitalize people for the treatment, they used to, but insurance companies stopped paying for it. They told me that I was emitting as much radiation as a dental xray within an arm's length away from my body (and they put lead suits on people for those xrays!!). They also told me I could theoretically cause a first trimester miscarriage by exposing someone to that kind of radiation. Six months after the treatment I went in for a smaller dose of radioactive iodine so they could see if they had got it all. I thought I'd be isolated for less time because it was a smaller dose, but it ended up being 5 days that time, too.

What about thyroid replacement hormones? Are they safe? Is it hard to remember to take them?

If you need to take thyroid replacement hormones because of thyroid cancer or other thyroid disorders, it is manageable. I have taken them for 5 years, through 2 pregnancies and 21 months of breastfeeding. They are safe, and if you are on the right dose, the side effects are minimal. I have an acquaintance (my sister-in-laws sister-in-law) who has a thyroid disease and had to have her thyroid removed. Her young children also had to have their thyroids removed. All of them take Synthroid and have been fine - they have grown normally. It is also a fairly inexpensive medicine. I take the generic form, Levothyroxyl, and I can get it through the pharmacy for $4 for a 30-day supply without them even billing my insurance.

Every morning my alarm goes off at 6 a.m. and I take my thyroid medication. I keep my pill bottle and some water on my nightstand. I sometimes go back to bed after that because I can't eat for an hour after taking it. When I am pregnant, I always go back to bed for the full hour because it makes me nauseous to get up without being able to eat. It has become a habit. If I don't take my medication, I feel the effects and that is a good incentive to remember to take it.

If my medication is too low, I feel tired and am cold all the time. When my medication is high - which my endocrinologist leaves it high so my body isn't tempted to regenerate thyroid cancer cells - my heart races and I have trouble settling down to sleep, but other than that, I feel pretty good.

Advice, or perhaps more accurately, Lessons Learned

(1) Get a notebook and record everything.

Keep notes as you talk to each doctor, ask questions, ask them who you should talk to next. Keep track of any questions or symptoms you have so you can remember to ask about them. I found that there were a lot of people involved - in my case, an endocrinologist, separate people that did the biopsies, a surgeon, a radiologist. They didn't always do the best job of talking to each other and I wish I had done a better job of asking questions.

(2) Keep track of your thyroid medication.

The thyroid controls so many things: temperature, weight, energy level. In the body, the thyroid fluctuates to match what it needs, but the medicine can't do that. Gain or lose 5 pounds, have any kind of hormonal shift, and your thyroid medication can be the wrong dose. So I've found it is really important to be proactive and call when you think you need a change.

(2) Don't downplay - or let other people downplay - the seriousness of what you are going through.

The first thing most people say when I tell them I had thyroid cancer - is, "Oh, well, if you are going to have cancer that is the best one to have." There is some truth to that because thyroid cancer is so survivable, but that doesn't mean it is an easy road.

I approached my treatment with that attitude and I wish I had taken it a little more seriously. Every stage I kept pushing myself and telling myself, "This isn't such a big deal, why are you having such a hard time? Get it together!" I wish I'd taken some time to grieve and given myself permission to admit that what I was going through was hard.

It is a major thing to be diagnosed with cancer. Being a thyroid cancer survivor isn't easy either. I can't donate blood. I am not insurable by private insurance (my husband was laid off and started his own business and when our COBRA runs out, we'll be getting a plan for him and the kids and I will go onto the State of Utah insurance for the uninsurable). I live in fear of the thyroid cancer coming back (I read somewhere there is a 40% chance of recurrence within 10 years because the thyroid tries to regenerate itself) or getting another type of cancer because of the radiation I was exposed to during treatment. I take medicine every day and have to keep on top of it to make sure I am at the right dose. My 2-year-old thinks it is normal to sit on mom's lap every 6 weeks and watch her blood get drawn.

I am grateful -- grateful to be alive, grateful to have two beautiful daughters. I just don't want to forget or minimize what it took to get here either.

Sunday, December 12, 2010

Thyroid Cancer Part 1 My Story

In December of 2005, I was getting ready to serve a mission for the LDS church. I was called to the Czech Prague mission and planned to enter the MTC on December 28. I was 25 years old.

I was busy with preparations, buying things I would need to take with me for an 18-month mission, interviewing replacements for my job as a technical writer, giving notice I wouldn't be staying in my apartment after the end of the month, and selling my car.

I came down with a cold and, as it progressed, I guessed I had a sinus infection and went to see my doctor. He checked me out and agreed that I had a sinus infection, but also mentioned that he had felt a lump in my neck that was more pronounced because of the swollen lymph nodes from my sinus infection. He told me not to worry too much about it, but that we should probably check it out just to make sure.

There was an endocrinologist in his building that was able to get me in right away. He felt the lump and agreed; it was probably nothing to worry about, but we should do a fine needle biopsy just to make sure. He knew I was planning to leave on a mission before the end of the month, and was able to get me in for the biopsy right away.

I went for the fine needle biopsy. At this point, I was so focused on my preparations for a mission and Christmas that I hadn't really let myself worry about what the results could be. I was told to lay back on a table, my face and body was covered with a blue cloth drape. They cut out a hole in the drape to get to my neck, disinfected my neck, and began probing around in my neck with a needle. It didn't last long, but it was extremely uncomfortable.

A few days later, I met with my endocrinologist again to go over the results. He explained that the results were inconclusive. There was a chance that I had thyroid cancer. However, the chance was small and his normal recommendation would be to wait 6 months and do the biopsy again. But since I was leaving the country for 18 months, he expressed concern that I wouldn't be able to follow that plan. So he gave me a choice: I could go on the mission as planned. Thyroid cancer is slow growing, and even if it did end up being cancer, it would probably be fine to wait 18 months to find it and start treatments. Or I could go ahead with a surgical biopsy and we could find out for sure and then decide where to go from there. He gave me the name of a surgeon and I left his office.

This was the first time that it hit me that I might not be going on a mission. I was training my replacement at work and had given notice, I had given notice on my apartment, and I had just sold my car.

After praying about it, I decided that I wanted to go ahead with the surgical biopsy. I called the surgeon's office and explained what I needed. They told me they could schedule me in April for the surgery. By this time, it was December 21st. I explained to them that I was planning on leaving the country for an LDS mission on December 28 and asked if there was anything they could do for me before then. They were able to schedule me for surgery on the morning of December 28.

I was able to delay my mission. If all went well with the surgery, I could leave a week later. My family came into town for Christmas. They had been planning to see my off after Christmas, but instead, took me to the hospital on the morning of December 28, 2005 for a biopsy. I went in early in the morning and was prepped for surgery. The plan was to cut into my neck and cut off the lump on my thyroid for a biopsy.

When I woke up I was sore. My neck was sore, as were my back and shoulders. The surgeon stopped by to see how I was doing. He mentioned that when he got in there he saw more lumps on my thyroid and they didn't look good. He made the decision to take half of my thyroid. The biopsy results would be back the next day and we would have a better idea of what to do, but he prepared me for the likelihood of thyroid cancer -- and the possibility of going back in to remove the rest of my thyroid.

That night I stayed up late praying and thinking. By midnight, I felt a great peace. I knew that it was cancer, I knew that I would not be going on a mission to the Czech Republic, and somehow everything would be okay.

The next morning the surgeon came back in to check on me. I was healing well from the surgery, the biopsy results still weren't back, and I was released to go home. Later that day, he called me with the biopsy results. It was cancer. I would need the rest of my thyroid removed. It would be easiest to go back in through the same incision, so they scheduled me for surgery the next day.

December 30, 2005 I was once again being prepped for surgery. They took out my entire thyroid. I got a call from my work while I was in the hospital recuperating. They wondered how I was doing -- and, by the way, my replacement hadn't worked out as hoped, is there any chance I would be available to come back to work? Although I had filled out all the paperwork to quit, my boss was holding onto it while I let my vacation run out first. I made arrangements to return to work in a couple of days after I had healed from the surgery.

New Year's Eve I was released from the hospital. The surgeon said I was healing well, explained the signs of infection I should be watching for, and told me that the next step would be to schedule I-131 radiation treatment. The thyroid sucks up iodine and so it makes it easy to kill with radioactive iodine. We would wait 6 weeks for the thyroid hormones to drain out of my body - and the last 2 weeks I would go on an iodine-free diet - and then when I was given the radioactive iodine any remaining thyroid cells would quickly suck up the radioactive iodine and be killed. It was easy, targeted - no months of chemotherapy or topical radiation treatments. If there was a cancer to have, this was it because of its easy treatment.

So I went home, and went back to work January 2, 2006. My incision was healing well -- I did have black and blue bruises on my neck, but I was able to cover those with scarves. I bought a new car. My landlord hadn't found anyone to rent my apartment yet so I was able to stay. It all worked out beautifully and I was very blessed.

However, I started to notice things. I was exhausted at the end of the work day. I would come home from a day at work and crash. I wasn't able to do anything more that evening. I was freezing cold. Nothing I did could make me feel warm. I was gaining weight and couldn't explain it. I kept telling myself I needed to pull it together -- I just needed to focus and I could get through this. Two weeks after my surgery, I called my surgeon. He examined my incision, and said it was healing beautifully. I explained my concerns -- even asked if there was any way he could write me a medical excuse from work. He was sympathetic, but explained that the incision was healing beautifully and he had no reason to write me an excuse. I was miserable. I found that many nights I would get home from work, collapse in the entryway, and sleep there. Sometimes I would stagger to my bed, but as often I would end up on the couch. Some nights I didn't even make it to the couch, and I would sleep on the floor not even haven taken off my coat. I made it through my days at work in a haze and wondered how I could possibly keep going.

A month after my surgery I got a call from my endocrinologist. He had just received a letter from the surgeon's office telling him my thyroid nodules had been cancerous. He expressed surprise, sympathy, and concern. I mentioned the symptoms I'd been experiencing and he told me that was a normal reaction to not having a thyroid. I mentioned that I had been struggling to keep up with a full-time job and he expressed incredulity that I was still working. I cried with relief when he promised to fax over a doctor's note that would let me go out on short-term disability.

The next 2 weeks were hard, but not having to work made them bearable. I also had to start an iodine-free diet. The hospital gave me a list of things I could eat, and it wasn't a very long list. It was a long two weeks of living on plain chicken and rice (no salt! no flavoring!) and fresh fruit and vegetables. I later found several recipes online that could have been used on this diet. Even salt would have been okay if I had bought iodine-free salt.

At the end of the 2 weeks--February 2006--I went to the hospital for the radioactive iodine treatment. I was given a lot of papers to sign -- the radioactive iodine would go through my body, substantially increasing my risk for other cancers. I was given a long list of instructions. Limit exposure to people - they told me that I would be emitting as much radiation as a dental x-ray and would be a danger to those around me. Keep everything separate - I was to use a separate bathroom from anyone else, wash my clothes separately. Even silverware wouldn't be safe for someone else to use because the dishwasher wouldn't get rid of the radiation. I was best to use plastic silverware and throw it away.

After we went through the long list of instructions, they showed me the elevator that would take me out directly to the street after I drank the radioactive iodine. I was taken to a room. A person in full protective clothing came in, opened a walk in freezer, used tongs to carefully extract the radioactive iodine and pour it into a tiny beaker of water. I then drank the radioactive iodine and walked into the elevator -- covered in radioactive warnings and danger signs - and went down to the street and down to my car.

I went home and went to bed, dizzy, nauseous, and worried about all of the long-term effects I had been warned about. (It has been 5 years since my treatment, and I was recently told by an endocrinologist that they have revised the guidelines because of the long-term effects and now I would be given less than half of what I was given then.)

I spent 2 days alone in my room, leaving only for frequent bathroom breaks and to pick up food that friends had left on the doorstep. I was nauseous and exhausted. I spent another week at home, although, I could have a few visitors. Provided they weren't pregnant and stayed on the other side of the room.

Then my endocrinologist sent me to get blood drawn so he could figure out the correct dosage of synthetic thyroid hormone. I would be taking these pills for the rest of my life. First thing in the morning, an hour before eating, with a large glass of water.

As I began taking the thyroid hormone, Synthroid, I began feeling much better. I was able to go back to work and resume most of my normal activities. I still found that I was cold all the time. I still had trouble losing the weight I had gained. And I found that I didn't have nearly the energy I used to.

I went every 6 weeks to have my blood drawn and my endocrinologist adjusted my Synthroid based on the lab results.

In August of 2006, I was given a small dose of radioactive iodine and a body scan to determine if the thyroid cells had been destroyed. Even though the dose was lower, I was still told to observe the same precautions as before. Luckily, this does didn't make me nearly as sick. The body scan showed the thyroid cells had been destroyed and I was declared in remission.

Sunday, December 5, 2010


Do you know about 2-1-1? In many areas of the United States, 2-1-1 is a place to call to get information on services available in the community.

Need help - or know of someone who needs help that is beyond your ability to provide? Call 2-1-1 and they can help match you up with local community services.

Want to volunteer? Call 2-1-1 and they'll match you up with volunteer opportunities.

You can also check them out on the web. Do a search for 2-1-1 and your city or state.

I live in Utah and our 211 website is: There are so many resources here! In fact, if you go to Specialized Resource Lists, they have a list of .pdfs you can print on various topics. I keep copies of the Homeless Resource List in my car to share with those in need.