Thyroid Cancer

I wrote this around February.  I never really meant anyone to see it. I considered publishing it possibly in a medical journal so that others with Thyroid cancer could possibly find something to relate to.  I am not sure if everyone has the same experience I have had with Thyroid Cancer but this is about my experience and my feelings.  I want to premise this with, overall I am extremely lucky with my diagnosis.  I know others have not been as lucky as me and my heart goes out to each one of them. Cancer is a horrible thing to be diagnosed with and live with.  The treatment options available seem worse than the cancer itself and I hope the future brings better treatment options.

Why Thyroid Cancer Sucks!

“Of all the cancers you can have, thyroid cancer is the best.” That is what everyone told me while I was going through the unknown, wondering if I had thyroid cancer or not. It all started innocent enough. I decided to go to my doctor because I was feeling lethargic. I didn’t really think much of it. I had two little girls at home and just wanted to have everything checked out to make sure I would see them grow up. I figured as usual I had nothing to worry about and I was just being a hypochondriac which I tended to do a lot. The first step is always admitting you have a problem, right?

That is when it all started. The doctor called back and said my test results were weird and they were sending me to see a thyroid specialist. Weird? What does that even mean I wondered, but I didn’t really give it much thought. I went to my appointment with hopes and dreams that finally my fatigue would get in check and I would possibly start losing weight because obviously my thyroid was messed up and causing all my problems. The doctor confirmed my results were “weird” and ordered a huge panel of tests. He felt my neck and decided to do an ultra sound. This was the first time I heard the word cancer and thought no way could that even be possible. He did the ultra sound and found a nodule, it was fairly large and nonchalantly stated we needed to biopsy it to determine if it was cancer. However, I had no reason to worry cause thyroid cancer was rare. I put it out of my mind, I was young. I just had two beautiful healthy baby girls. No one in my family ever had thyroid cancer, or any cancer that I was aware of. I had never even heard of thyroid cancer before. I went about my life as there was no possibility that this would impact me, I pushed it out of my mind.

The day of the biopsy I felt we were just being overly pre-cautious. My other lab results came back perfectly normal so I had nothing to worry about. The biopsy was unpleasant and hurt. I hate needles so much and that day was no exception. It was quick, slightly painful and I ended up with a beautiful band aid and ice pack, I figured that was the end of that. A few days later I got a call that there was about 20% chance that the nodule was cancer and I had to go in for another biopsy. That was a scary call, I realized that I have went from “weird” test results, to there is a lump on your neck let’s do an ultrasound, to that is a large nodule we need to biopsy it, don’t worry thyroid cancer is rare and there is only about a 6% chance of it being cancer, to my chances have just increased and this seems like a real possibility.

The second biopsy I brought my husband, I wasn’t sure I would be able to fully understand what was going on. They kept saying cancer but not to worry and I was screaming inside wondering how am I not supposed to worry. The second biopsy hurt about as much as the first and the conversation was about as pointless and no concern as it was rare and if it was cancer it was no big deal as there would be surgery to remove the thyroid and a radioactive pill to kill the remaining cells and I would be good to go. However, I felt like I was missing something, it couldn’t be that easy could it? Was it really no big deal like everyone keeps telling me? The second biopsy was done and my results came back with a higher percentage chance of it being cancer but they still weren’t sure. It was up to me if I removed the half of the thyroid with the nodule as a precaution, it was after all 3 cm in size and may have been causing some swallowing issues I was having. Being the overly cautious hypochondriac I am, I decided to go through with the surgery.

Every time I brought up what I was going through looking for support and help to digest what was going on I was met with some really poor support. The medical community treated it like it was not a big deal and it wasn’t definitively cancer so there was nothing to worry about at this time. My family and friends had no idea how to react, cancer is terrifying so they tried to be supportive but no one was sure it was cancer so what do you really do? They tried to be optimistic and say that I’d remove half my thyroid and that would be the end of it. I was just numb and not really sure what to think at this point and just went through the motions of what I needed to do.

My first appointment with a surgeon was the worst experience with a doctor I have ever had. They were an hour late, I went in and we were already making a follow up appointment and we didn’t even do anything this appointment. I mentioned my concern about it being cancer and what would happen next. I was told I was worrying about something that we were not even needing to worry about at this point and we didn’t need to discuss it. I would come back in for a follow up and then we would have the surgery. I wondered what the point of this appointment even was. I was incredibly upset when I left the appointment. I had my husband with me and I asked him if the doctor was being difficult and insensitive. For the first time since this all started he actually gave a definitive opinion and agreed he was not very pleasant. I immediately called my doctor office and got a referral for another doctor. Which was not something I wanted to do, I didn’t want to have to wait for another appointment. I just wanted this out of my body so I could move on with my life and forget the word cancer was even mentioned. The not knowing was driving me crazy and I felt like this cloud was hanging over me and in a moment it would just be more than I could handle.

My second appointment was a night and day experience. The doctor was amazing. He didn’t make me wait and he actually did an exam. We would schedule the surgery and there was no need for an appointment before hand. I was already feeling so much better with this doctor, I felt safe. I then asked him the question that I knew the answer to but I still needed to understand it. What if it is cancer? He replied just how I needed to hear it. Not how everyone else had been saying but what I needed to hear. We are not there yet, so don’t worry about it. However, if it is cancer we will then remove the full thyroid. While you are under we will biopsy the nodule and if it is cancer, while you are still under I will remove the rest. If it comes back as not cancer, we will send it away to make sure and on rare occasions you will have to come back and have the rest removed. I felt at ease and now I was just dreading the scar on my neck I would have the rest of my life. I already started buying scarves in anticipation. I googled images of other peoples scars to prepare myself.  I discovered the more I talked about my ordeal the more I found out about others who had their thyroid removed. I was impressed with the recovery, even though I felt like the scar would always be a giant sign that said, “Hey look! I had my thyroid removed!”

The surgery happened, it was scary cause it was surgery. Good news it wasn’t cancer and only half my thyroid was removed. Everyone was right and I had nothing to worry about. I went home and started to enjoy my leave and recovery. The Wednesday after the surgery I got a call. I will never forget this call. They said that my lab results came back and it was cancer and the doctor wanted to see me and have the rest of the thyroid removed. He wanted this done quickly so I had little time to heal and the surgery would go easier.  Everything was scheduled very quickly and I was just numb. I cried. I always knew it was cancer the moment they used the c word. I was in denial but I knew this was going to happen. I was trying to be optimistic about the whole ordeal but my worse fears were answered. I knew what to expect. I had already prepared myself. It wasn’t a big deal, it was going to be removed and I would go about my life cancer free and it would be all okay. I had to be strong for my girls and for everyone around me. After all thyroid cancer is the best cancer to get, that’s what they all kept telling me.

I had the surgery, I had my follow up appointments. I now had the wonderful joy of seeing my endocrinologist every 6 months. We would have some blood tests, yay more needles. He would ask how I was, I would complain I was tired. It is expected, he would look at my blood tests and everything would be fine and we would see each other in another 6 months. I started to live my life 6 months at a time. I would have 5 months of carefree, no thought about cancer. I didn’t even care about my scar anymore, my doctor did an amazing job and I barely noticed it. However, every time I had to get my blood work, I would start to get that nervous feeling that it would come back and I would have to really experience what everyone else has had to go through with cancer. So far I thought how lucky I am. I only have to see the doctor every 6 months, have some blood work and I am good to go for another 6 months.

They never tell you though you will live in fear the rest of your life that the cancer will come back and you will not be so lucky to remove an organ and be on with your life. They never tell you that there are other tests you have to go through to ensure they are not missing any signs of the cancer. An ultra sound to get a baseline of where you are. That was the easy test. The full body scan you have to do after the ultrasound because they found thyroid cells and are concerned. The full body scan is awful because you cannot help but wonder, will it find something? Of course none of these tests are quick so you never get told the results quickly. You never get to find out you need to take the test, take the test and get the results all in the same day. No all of it happens for weeks,  which ensures you really get to wonder and become full of worry and concern. However, you can never really express this because again you are lucky it was just thyroid cancer, you haven’t had to go through what others have with cancer. You haven’t had chemo or radiation, you just have a few tests you have to take every once in awhile.

You have to be strong for your family. No one really seems to understand thyroid cancer. They just hear cancer and immediately are worried for you. You pretend it is no big deal to help ensure them that you are okay. However, inside you are scared to death because you know for the rest of your life you have to wonder how long will it really be no big deal. You can’t really voice your concern with medical professionals cause it’s just a test, you are lucky it was only thyroid cancer, there is no real concern here. It’s when you meet other people that have thyroid cancer do you really get a good idea of what it means. This is what no one tells you, or really comprehends.

When you talk to other thyroid cancer patients, they will all play it off as no big deal because that it was we are told. We all had the same surgery and now no longer have a thyroid. We have our scar that we do not notice anymore. Some of us had radiation after our surgery to limit the chance of our thyroid cancer coming back, some of us didn’t. However, we all spend the rest of our lives going to appointments to make sure we are still okay. We all struggle with our medications. We have no thyroid and we have to take high doses of thyroid medication to ensure that our thyroid cells are not active and risk re-creating the cancer. This causes problems that only a person without a thyroid can understand. Imagine being completely exhausted most of the time. When you wake up in the morning you can barely get out of bed until you have had your thyroid medicine which makes you feel like you can actually start the day. You cannot eat for 30 to 60 minutes after taking it, so you really have to plan your day. Everyone has different medications and doses, it is the most un-exact science, it feels. No medicine or dose works for everyone, it’s a series of guesses and checks. The worst is if you end up having too much you become hyperactive thyroid and the world just spins and you cannot do anything till your levels get back in balance. When you actually talk to people who are going through this, you discover all of the things no one can prepare you for.

I am lucky I only had thyroid cancer. I get to spend the rest of my life wondering if it will come back and if I won’t be as lucky. I will spend the rest of my life having various tests done hoping they never show anything. I get to be a guinea pig with my medicine and spend a life time in trial and error hoping to feel some what normal. I cannot complain to anyone cause I am lucky it was only thyroid cancer. I do not have all the horror stories other cancer patients have, going through chemo and radiation. I do not have the understanding of how deadly cancer can be. I have convinced myself that I really do not have cancer, I cannot complain about it or worry about it because I see what others have to go through and I think how lucky I am. Once in awhile though, I have to have a test that just terrifies me to no end wondering if my luck will run out. I wonder will I ever have my medication in order to feel normal and what is normal anymore. I am very lucky I do not have the experiences of most cancer patients. I am going through something that only fellow thyroid cancer patients can understand. They say it is rare but I have met a lot of them, we all fear the unknown and we are all just trying to make it through the day and feel normal. We cannot ask for help because we got lucky and are not going through real cancer problems. We silently put on a brave face and think how lucky we are, when on the inside we are screaming for understanding and someone to help us through it all.

Recently my appointments have been moved up to every three months. My medication is messed up, I think.  If I take my full does my face goes numb and my fingers are numb.  The only thing I can do is ride out the day.  I also get incredibly irritable and am a nightmare to be around.  I am working with my doctor to get my dosing right, but he is not entirely convinced it is related to the thyroid.  So here I am a female, with no gall bladder, no thyroid and in child bearing years. If I say I am nauseated or dizzy they immediately ask if I am pregnant.  No one knows what is causing my symptoms and I just go from one doctor to another trying to figure out the cause. I have a doctor for everything.  I never thought I would be just over 30 years, with a medicine cabinet full of of various medications and multiple doctors in my address book. I can hold my own with any older person in a health conversation and I feel they tend to feel sorry for me. It’s been quite the experience and I hope if this helps one person feel they are not alone it was worth writing.  Also I have discovered that Medical Marijuana has really helped with a lot of my symptoms my constant nausea, dizziness and overwhelming stress and anxiety of the unknown. My doctors don’t even say anything when I say I have my card, it’s almost like they know it is a better choice than the countless prescriptions they would have to prescribe for the same results.

If you have any questions or can relate to my experience. I would love to hear your comments.  I do enjoy hearing about others experiences.  It makes me feel like I am not completely alone going through this all by myself.  Thank you for listening, I hope it was informative.

7 thoughts on “Thyroid Cancer”

  1. You my lady are not alone. I am a 34 year old female to a daughter who is 3. You are right we can not feel or be heard we just have to say I am okay and keep going. I just had my whole thyroid removed on Sept 6th 2016 and something that was nothing turned into something the “c” word cancer. I have not had a moment to think of it or what could have been. However I still feel tired and working with my primary doctor for adjustments to medication. Thank you for sharing your experience.

    1. You are why I wrote that. I got a little teared up. The surgery is the easy part. Getting your meds right is the constant struggle. Somedays are always better than others. But you are not alone. 🙂 xoxo

      1. I appreciate you writing the experience and hopefully it will help more than just us knowing we have the easy cancer to the world and yet still have to face the big cancer and the what ifs.

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