It has been five and a half years since I had thyroid cancer, and I feel strongly about getting the word out about this little-known cancer that more and more people are being diagnosed with each year. In my case, as is the case with a lot of others, there is no family history or any other known cause.
Thyroid cancer is quickly becoming one of the most common types of cancer, with an alarmingly high rate of new diagnoses each year. It also has one of the highest rates of survival when caught early.
Yet most people are unaware of what their thyroid is, where it is and what it does. Much less how to find out the signs of thyroid cancer.
I was included in those numbers. I had heard of the thyroid, but that was about it. Now I can tell you much more than I ever wanted to know about that very important gland.
I want to share with you a letter (e-mail) that I sent to my friends and family when I was going through the ordeal. I was on a very good support forum for thyroid cancer and writing this letter came highly recommended. The group was through ThyCa.org (thyroid cancer) a highly recommended resource on the topic.
This is my letter…
Dear Family and Friends,
My Journey With Thyroid Cancer
I am sending this e-mail out to friends and family to share my experiences (past, present and even future) with thyroid cancer. As I’m sure you know about me, I express myself with more ease in writing than speaking so this seemed to be the logical way to explain my situation to many people that care. Some of you have asked about it, and I am happy to share all I have learned and experienced. Maybe it will help you understand what I’ve been going through, or another friend or loved one someday.
For those who may be interested in skimming I have bolded the main points and you can read what interests you. If you don’t want to read this, feel free to use the delete button at any point – I won’t be insulted. Don’t feel obligated to answer this, really. This may be more than you ever wanted to know about the thyroid or thyroid cancer or me.
About the Thyroid Gland
I suspect most of you are like me – knowing little of this gland called the thyroid. I knew the name, but had no clue where it was or what it did. Here’s the brief version: The thyroid is a butterfly shaped gland at the base of the neck (just under the Adam’s apple), and wraps around the front of the windpipe. It utilizes iodine (usually taken in from food containing iodine), to produce hormones that regulate our metabolism and organ function – it affects about every tissue, cell, and organ of our body. If you don’t get enough of this hormone, you have hypothyroidism (hypo) – too much, you have hyperthyroidism (hyper). Both have a lot of potential symptoms. A lot of hypo symptoms are also those that happen with other conditions – like stress, aging, and menopause.
How my Cancer was Discovered
In 2005 I went to the doctor because I thought I had a sinus infection and the doctor felt my neck for swollen glands and found a lump which he said was a nodule on my thyroid. He started talking about the possibility of cancer and wanted me to get blood tests and ultrasounds right away. This was a lot more than I was expecting coming in to be seen for a sinus infection, I just wanted antibiotics! Many ultrasounds and needle biopsies later it was discovered that I had five nodules (growths, goiter) and some showed suspicious cells. I got a number of opinions from many different types of doctors (endocrinologists, an ENT, an oncologist and a general doctor). The opinion of most doctors was that my chances of having cancer was very low so watching the growth through ultrasounds and needle biopsies was my best option. (The only doctor who wanted me to have a surgery was the ENT who is a surgeon, NOT the surgeon who eventually did remove my thyroid.)
After watching the nodules (one of which disappeared on its own) the consensus started moving toward the opinion of having my thyroid removed because more suspicious cells were being found and the nodules growing at a faster than normal rate — a very bad combination. I was then sent to a different ENT to discuss the option of surgery and he was not pushing me to get surgery at all, he said that because he is a surgeon it would not be ethical of him to try to convince me to get the surgery. Instead he took the time to explain the details of my lab results that I had not understood up to that point. Along with that and many prayers (and the continued growth of nodules and more suspicious cells being found) I scheduled the surgery date. (Unfortunately it is not possible to only remove the nodules without removing the thyroid, there are too many factors making it impossible. It is also often very difficult to get a positive diagnosis for thyroid cancer without removing it.)
Upon having my thyroid removed it was discovered that I did indeed have thyroid cancer: papillary carcinoma. It was in more than one nodule and on both sides of my thyroid. It appears to have remained within the thyroid as none of the surrounding lymph nodes which were removed had any cancer. Although the cancer did spread outside of one nodule to a blood vessel within the thyroid. That does concern me about the possibility of the cancer spreading but I have not asked my doctors about this directly. They still believe that it most likely stayed within the thyroid.
Treating it is extremely important so that the cancer does not return. The cancer can return if any thyroid tissue remains, and you cannot get all the thyroid tissue out with only surgery. There is always some tissue left behind even with most skilled surgeon. So it is very important to destroy all remaining thyroid tissue with radiation. The surgery is a very important part of removing the cancer and is the first step in the process.
The surgery was very delicate, because there are little things like the vocal cord, nerves, and 4 little parathyroid glands (which control calcium levels in the body) all interwoven in there. I had an EXCELLENT, very skilled and experienced surgeon; other doctors have told me he is one of the best. He was able to remove my thyroid and leave 2.5 parathyroids (you only need 1/2 of a parathyroid so I am doing good even though I’m missing 1.5). My calcium levels dropped severely after the surgery (more than normal for this type of surgery) so I had to stay in the hospital a couple of extra days to get my calcium up. I had numbness and tingling in my mouth, hands and legs due to the calcium levels dropping. At one or two points I couldn’t even move my left hand!
Having Thyroid Cancer
One hard part – emotionally – is just to deal with “having cancer”. You may hear people say (doctors said this to me), “Well, if you’re going to have cancer, this is the one you want to have”. Cancer is cancer. What they mean, and what is more accurate, is that thyroid cancer is generally a TREATABLE cancer. Most people, especially with papillary carcinoma like me, do not die from it. This is good, it is VERY good! I count my blessings in this respect. But it’s still cancer, and it’s still scary.
When you lose your thyroid (all or part), you are placed on hormones to take the place of what the thyroid would normally produce (it actually produces the hormone T4, which is converted by the tissues to another hormone, T3). You may know someone who takes Synthroid (or maybe you do) which is a brand name, used generically like “Kleenex” is for “tissue”. (I take a generic of Synthroid.) When you have no thyroid you take it every day for the rest of your life. You have to because eventually, you’ll die without it – your body will simply shut down (this takes a long time, not sure how long).
Radioactive Iodine (RAI), the Radiation Treatment
The next step for me (and most with thyroid cancer) is to have RAI (aka I-131 or radio-active iodine) I will take a pill of radioactive iodine. I will actually BECOME radioactive for a time. At first I will pose a danger just being in close proximity to other people but that risk goes down pretty quickly, one day for the test (low) dose and up to four or more days for the big dose. The amount of time is greater for being around small children, I still need find the specifics on that in order to keep my son and the preschool kids that I watch safe. Once I am safe to be around people I will need to take special precautions with fluids as the radiation will stay longer in saliva especially. I will have to take the same precautions as if I had a contagious flu. So I won’t be sharing food with anyone for a while. Thankfully the Thyrogen shots (explained in a couple paragraphs) will help get the radiation out faster.
Since the thyroid is the only gland that absorbs iodine, the RAI kills the remaining thyroid tissue left from the surgery and also any thyroid cancer cells. The treatment significantly reduces the chance of recurrence. Also, once the thyroid is no longer there producing hormones blood tests can track your levels and determine whether the cancer has come back at a later time.
First, they have to remove all the thyroid hormone possible and in the past thyroid cancer patients would have to stop taking their thyroid hormone replacement (Synthroid or other medication). I thank God that earlier this year the FDA approved another method so that I will not have to go off the medication. I felt horrible for two weeks waiting for it to kick in, I cannot imagine being off it for around 4-6 weeks. I will instead have to go into the hospital four times during my two weeks of treatment to receive Thyrogen shots. I’m not looking forward to it of course, but it is a hundred times better than going off my medication. The Thyrogen shots will trick my brain into thinking that I am not taking my medication when in fact I am and I will not experience any hypothyroid symptoms.
Low Iodine Diet (LID)
Additionally I will need to starve my body of iodine as much as possible allowing the thyroid to “uptake” or take in more of the radio iodine and having it be more effective. For 1 week prior to the start of the treatment I will begin to follow a low iodine diet (LID) for three weeks. Basically, I will eliminate things with iodine from my diet as much as possible. It sounds easy, but it’s pretty challenging. I won’t eat, among other things: dairy, seafood, soy, red dye #3, or anything that contains iodine. This includes obscure ingredients in foods like lecithin, carageenan, iodized salt. Most foods that say “salt” don’t distinguish whether it is or is not iodized, so it’s good to avoid anything containing salt, though the SODIUM is not a problem. I could have non iodized, or plain, salt to my heart’s content. Some foods and containers are also processed or cleaned with iodine, so I need to avoid those, as well.
I have one friend who is going to do this diet along with me so that I have someone else to do the diet with which I really appreciate! I have made it clear to her that I want her to get her daily dose of iodine in each day because not getting enough iodine can hurt a healthy thyroid. The point of me going on the low iodine diet is to kill off my thyroid tissue! I don’t want her to hurt hers while she’s trying to be a good friend to me.
My LID and RAI
I will start my LID on Monday the 14th, one week before I start my treatment. On Monday the 21st I will go to the hospital and begin my first Thyrogen shot after having a bunch of blood work done. I will have the shots on Monday and Tuesday and then get my first (low) radio iodine pill on Wednesday. I will be radioactive and will have no contact with children and limited contact with adults for 24 hours. So, the next step will be to have a body scan on Friday to see where the remaining thyroid tissue/cancer may be. It will be a full body scan and I will have to lay completely still for up to an hour and a half. I can’t wait!
The following week I will have the same schedule (still on the LID) only on Wednesday I will have the “big” radio iodine dose and be admitted to the hospital while I am radioactive and not safe to be around people. Possibly up to four days. Although the Thyrogen shots that I will receive will also help to me to get the radiation out of my system faster (both short term and long term) so the 4 days is likely for patients who are not getting the Thyrogen shots. When I say short term and long term, by short term I mean getting enough out so that I can be around people and by long term I mean the length of time it will take to get the radiation fully out of my body, it will hang out in my blood in very small doses for quite some time. The length of time will be dependent on a number of factors such as how much of my thyroid tissue remains, the more that remains the longer it will take. I had a very skilled surgeon who removed my thyroid so I should have minimal thyroid tissue remaining. Also the thyrogen shots should help to remove it from my system faster as well.
While I am in the hospital everything that I touch will need to be destroyed in the special manner that they use to destroy radioactive materials. I wonder if I will glow at night and if that will keep me awake? I can only bring things with me that I don’t mind having destroyed after I leave, such as magazines. I must leave my electronics. My mom is going to give me a paperback book to read, with all the time on my hands I will probably finish it! If I don’t I will have to buy a new copy to know how it ends!
I’d like to think that overall despite fears, tears and some frustration I’ve kept a pretty positive attitude through all of this. I know that God is in control, he showed me that I even had needed to get this looked at when I had no clue. I thought I had a sinus infection and he led me to a doctor who knew what the nodule was when he felt it – apparently most general doctors aren’t even familiar with thyroid nodules.
Some of you may be wondering what to say that can help (or what not say). I will always appreciate people telling me “hang in there” or any form of “I’m thinking of you” or “I care” or that I am “in your prayers or thoughts or heart”. It’s ok to tell my YOU’RE worried, that you know I am, or that you wish you could change this. It’s ok to ask me questions. If we see each other, just giving me a hug is great. I won’t break, and you can’t catch my cancer.
I thank all of you for your thoughts, support and prayers! And in case I haven’t said it – thanks for caring about me!
Thanks for reading! I hope that you have learned something helpful and don’t forget to check your thyroid for lumps! Feel free to leave any thoughts or questions in the comments section! If you think this is an important message please retweet and share on FB!
(Image Source: ThyCa.org)