In December of 2014, I had to make some tough decisions regarding next steps in my thyroid cancer treatment. I had had a total thyroidectomy a few months prior in September and given that the cancer had spread to my lymph nodes, I was told that the best course of action was to have radioactive iodine (RAI) treatment. I was then confronted with the decision to either go through withdrawal from my thyroid hormone replacement (T4 hormone/ Levothyroxine) or taking Thyrogen injections, in preparation for RAI.
At the time, my endocrinologist recommended that I go the route of slowly withdrawing by stopping my thyroid hormone replacement before the radiation treatment, rather than taking the Thyrogen injections. He explained that he would do either method but had his reservations about the “fast” Thyrogen approach being fully effective.
It was an incredibly challenging decision because every cell in my body was screaming to not put them through a prolonged state of being hypothyroid. However, if I was going to have to get radiated, I wanted the best chance of getting rid of all the cancer. So I trusted my doctor and went with the thyroid hormone withdrawal method.
However, there was and is increasing evidence that the RAI with the Thyrogen injections is just as effective. This is one of the reasons why it is so important to educate yourself or have the support of trusted people.
The premise of radioactive iodine treatment is that the TSH level (thyroid-stimulating hormone or thyrotropin) needs to be very high for the treatment to be effective. This is because TSH is what stimulates the thyroid tissue to take up iodine in the body. So taking radioactive iodine is a bit like sending a Trojan horse into the body, because then all the thyroid cells in the body, both normal and cancer will then essentially take up the radioactive iodine and then self-destruct.
There are many people all over the world trying to make these decisions, and while it can be helpful to discuss this process with others and get a sense of the options, ultimately you have to make the decision that seems best for you at that time. Sometimes you may need a little more time to decide and a little more information, give yourself permission to do that. I often felt like I was on a conveyor belt taking me along a certain path and I was resigned to whatever was going to happen, and that was largely because of the depression I was also dealing with at the time. Being an active participant in your healthcare decision-making is something you are entitled to. Ask as many questions as you need, get as many opinions as it takes. There are also a number of research studies investigating a 'wait and see' approach for very low-risk papillary thyroid cancer. For example, this thyroid cancer study in Canada investigates other options for treating early stage papillary thyroid cancer.
Identify 1-2 people who can support you with decisions
It can be exhausting when you're in the midst of treatment and when you're unwell trying to figure out what is the next best step. Depending on where you are at and how you are coping with everything, it can be helpful to have a couple of people you trust support you with getting more information and in making decisions. Personally, I know that when I was at this point, I didn't have the capacity to do any research or be as proactive as I would have liked to be. Maybe if I had the ability to look into this more, I would have opted to take the Thyrogen injections instead of going through the process of thyroid withdrawal in preparation for my RAI which happened in February of 2015.
Weigh pros and cons of options
This seems the appropriate time to mention that I have since changed endocrinologists again. Based on the information that I had, that my thyroid cancer had spread and was an aggressive variant, I made the best decision with the information I had. But, there were so many “buts” and I can appreciate being in this position. Some of my "buts" were:
But what if I get leukemia in the future…
But what if my saliva glands are destroyed… (doctor’s response, “that sometimes does happen”)
But what if it affects my ability to get pregnant…
But what if the cancer never does spread further…
But what if I don’t really need it…
Over the course of dealing with a thyroid diagnosis, there are many decisions that have to be made. How to proceed with RAI was just one of them. This was a table I made at the time and shared on my personal blog.
|Option 1: Withdrawal from Thyroid Hormone Replacement||Option 2: Thyrogen Injections|
|What is it?||Stop taking Thyroxine (Synthroid) pills or other thyroid hormone replacement for some time to raise TSH levels before RAI. (source)||“Thyrogen® (thyrotropin alfa for injection), produced by biotechnology, is a protein whose properties are similar to natural human thyroid-stimulating hormone (TSH).” (source) The injections raise TSH levels rapidly in a few days.|
|Pros||No out-of-pocket costs for the injections||Can avoid hypothyroidism because of continued thyroid hormone replacement pills
Reduced prep timeline
|Cons||Go into a hypothyroid state||Costs upwards of $1000 and only covered by some insurance plans, sometimes only partial coverage (not covered by Ontario Health Insurance Plan (OHIP) at time of writing this)|
|Schedule||Stop Thyroxine several weeks before Radioactive Iodine||Day 1: First Thyrogen Injection
Day 2: Second Thyrogen Injection
Day 3: Radioactive Iodine
Know that you may have many feelings and they are all valid
I don’t know how to effectively convey the horror of that moment where the doctor asked me what my decision was about RAI. Having to make a decision, in a limited time span with only the information I had (and no power to see into the future), and having just broken down into a mass of tears outside the office, I felt like I had sentenced myself by decided to go through thyroid hormone withdrawal. Sentenced myself to more months of hypothyroidism symptoms including nausea, headaches, fatigue, depression, muscle aches, (not good) weight gain, cold shivers, irritability and more. Sentenced myself to continue fighting with my body and my mind. Sentenced myself to bringing more tough times on the people I care about. I asked the doctor how I was supposed to continue going through “this”. He shrugged. Not in an intentionally hurtful way because the truth was, he didn't know what it felt like.
It is an emotional process so when possible, remind yourself gently that you are doing the best you can.
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