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.

Comfort

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.

Information

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.