Q: When do you ask for a biopsy? What can you expect?
A: (Stacy): In my experience, it is best to get a biopsy (see here and here) on any nodule you have that measures more than 1 cm in diameter. My surgeon informed me about the 1 cm rule as that makes it easier to get a sample. I agree because my nodule was 1 cm when they biopsied it and it was difficult to get a sample. The procedure is generally pretty simple and quick. Mine was not however as we had an earthquake during it. I live on the East Coast and this is not normal! They also kept losing the needle. It took a VERY long time. This however is not normal and the procedure is generally pretty fast. I brought my iPod with me as it helps me relax. They will do a test on the sample to make sure there is enough to test. If not, they go in again. Once a nodule is found, regardless of whether or not it is biopsied, frequent ultrasounds need to be done to monitor growth. Biopsy of a nodule is an outpatient procedure. They cover you up with sterile cloth. The biopsy is done with an ultrasound to guide the doctor. Results generally take a couple of days to a couple of weeks. Anytime the nodule grows, you need another biopsy.
Q: When it comes to thyroid surgery do I have options? Can I wait to have surgery or should I do it right away?
A (Stacy): Yes, you have many surgery options! If you decide on surgery, there are two basic options: entry though the neck (traditional option) and robotic assisted surgery. The robotic surgery can enter in various locations. My surgery was performed through an incision in my armpit and I know some people have entry behind their ear around the hairline. I am sure that there are many other entry options. Traditional surgery is provided by all doctors. Robotic assisted surgery, however, is still new and not many doctors provide this option. I personally prefer the robotic surgery because they utilize a camera with an up to 50% magnification. I personally like the idea of not having a scar on my neck. However, in my first surgery, I experienced tightness around my arm and had trouble lifting it. I had to do some simple stretching exercises and they worked well.
This surgery is contraindicated for the elderly and people with certain medical conditions that make it hard for their arm to be above their head for hours at a time.
Q: Once you find you have cancer, do you need surgery?
A (Stacy): Maybe. This depends on the type of cancer you have and how aggressive it is. Some people opt to take thyroid medication to suppress their TSH and wait and see if the nodule grows or anything changes. However, this really is a personal decision and should be made after consulting with your doctor. I suggest getting two independent opinions from two different doctors at two different hospitals. After that make your choice. Also you may want to consider the cost as robotic surgery is generally more expensive. Post-surgery you want to make sure you have access to stool softeners as all the meds you get can cause many problems. Also an FYI to those with red hair: make sure you have a conversation with your doctor about your need for more anesthesia. I almost woke up several times during surgery. So please have this talk!
Q: What can occur after my surgery?
A (Stacy): There are many things that can occur during surgery that you don’t find out about until you wake up. Two of the most common are damaged vocal cords and low calcium levels. Another thing you have to think about is keloids (see here and here). I never had keloids before my thyroid was removed. There are several risk factors for developing a keloid, which I will list here. Whilst keloids don’t pose a health risk, they do have an impact on your body image. The four parathyroid glands are located behind your thyroid and they are about the size and shape of a grain of rice. They can easily be damaged or removed accidentally during surgery. You doctor will always (should always!) check your calcium levels after surgery. At this point if your calcium levels are low, they treat you based on what’s wrong. I had my levels checked repeatedly after my surgery and began to supplement with calcium. Unfortunately, my nurse did not know that you cannot take calcium and thyroid meds together as this affects thyroid hormone absorption, and so I had to fight with her with paralyzed vocal cords. My vocal cords were damaged and it took about two to three months for them to heal. It was the hardest thing I had to deal with. I am a therapist and my voice is very important for my work.
Q: Are there mental health issues that you have to deal with when you live in a hyper and hypo world?
A (Stacy): My personal experience is YES! I am so much more emotional. I never cry and am not an emotional person. Now I cry a lot. I go through periods of crying. It was worse the first year. Depression and anxiety have been a major issue for me since having my thyroid out. I have had suicidal ideations many times. The first year was the worse. I didn’t know whether I could get through it. I am on an anti-present/anti-anxiety medication. This is something I am trying to come off of, but it has been difficult for me. I have trouble concentrating, which I feel is similar to ADHD, and I have trouble staying focused and finishing my work. This affects my job as I have trouble finished my work and arriving on time. I have trouble sleeping because I am worried about everything and nothing. In the first year, this happened all the time and now it’s just from time to time. For me the mental health issues are directly related to my thyroid levels and any minor change will affect my mental health. I am learned to listen to my body, write down and track how I feel. This will allow me to know if I need my levels checked.
Q: What about the Low Iodine diet (LID) and diet modifications?
A (Stacy): In my experience, this can be confusing! Every doctor seems to have their own opinion on what you should do. I personally took the most extreme form of the diet. I personally feel that if I am taking RAI into my body, then I am going to make sure it works. I found the ThyCa Low-Iodine Cookbook and I even gained weight on it. Everyone has mixed information so I suggest lots of research and being comfortable with what you pick. Lots of food can easily be made iodine-free at home. I personally have highly modified my diet. This has allowed me to find which foods work for me and which don’t. I found a modified paleo diet works best for me. It has decreased my weight and joint pains. My doctor oversees my diet and we are always adding food in and watching my body’s reaction. I suggest everyone finds out which foods work best for their body. It was hard giving up dairy and nightshades, to name a few, but I am very glad I did!
Q: I keep hearing that I have to accept this new norm. Is that really true?
A (Stacy): In my experience, there is no such thing as a new normal. I refuse to accept this and have been working very hard to get ME back. While I am three years in, I am still getting better. I no longer have constant joint pains, insomnia, stiff hair, dry skin and that crappy feeling. I hate when patients say, “oh it’s the new normal,” because that tells me that their doctor doesn’t feel like working with them. Many doctors claim such symptoms are not caused by a patient’s thyroid, but that doesn’t make sense. This started for me at 26, so I knew for sure that doctors were wrong when they told me it wasn’t my thyroid because I was fine until they “took it”. Luckily, I can honestly say I am now about 75-80% better. Yes, I still have bad days. Yes, at times I still have joint pains, but it’s not every day and for that I am so thankful. Every day is a battle and a struggle and it takes way more energy than a “normal” person can understand to do day to day things, but I CAN DO IT and that makes me so happy. So please don’t become resigned to this “new normal” and buy into the doctors who claim that this is how you should feel.
Q: What’s the first year like?
A (Stacy): In my experience, it’s HELL. You need to make sure you give yourself time. All my hormones were messed up. I was crying all the time and couldn’t sleep. I felt guilty because people around me had to deal with me, I was not able to keep up with housework or, well, being awake period. My fiancé had to deal with my mood swings and crying, crying all the time. I was in pain from surgery which didn’t make it any better. I was fat and hated putting clothing on or going out of the house. I had vocal cord problems so couldn’t really talk. I went back to work right away and had trouble keeping up with my caseload.
Q: My support system just doesn’t seem to understand. How should I deal with this?
A (Stacy): In my experience they don’t. I share how I feel with my fiancé and let him know, “I’m in a bad mood for no reason and it’s going to be a crappy day for both of us.” Letting your friends know what you need from them will help them know what they can do. Also it’s important to remember that they are suffering from this too and they have their own set of fears and uncertainties, and you need to remember this when dealing with them. They may be in a bad mood or be suffering mood swings of their own and you have to keep that in mind. I have been in a relationship for 12 years and got engaged after thyroid cancer. So I know that understanding and working to see patients’ points of views can go a long way.
Please share your experiences on these topics. What questions do you have for Stacy and what advice would you like to give your fellow patients?