When it rains it pours. That’s been my life in 2009. This year will go down as the year that my life was turned upside down and rebuilt from scratch. Not only have I moved to a new town and changed jobs, but I’ve had my share of medical issues. My left ACL was torn and rebuilt, I took a silly fall which resulted in a small scratch that turned into a huge infection, and now I will be having a thyroid lobectomy.
Lets rewind to 6 years ago. It was the end of the school year and I was visiting a doctor (a PA to be exact) in Boulder because I had an unimaginably painful sore throat. While I was swallowing, she noticed a small lump in my neck. She said, “Do you have a thyroid nodule.” “Huh?” She recommended I get the lump checked out by the Boulder Medical Center’s endocrinologist.
So, I did. The endocrinologist I saw there was an unpersonable old man who had a very matter-of-fact way of treating a thyroid nodule. He basically told me that I had a tumor in my thyroid, which may or may not be cancerous- like it it was no big deal. As I spiraled through the emotional roller-coaster of how this was going to impact my life, the doctor decided to do biopsy. He told me it came back with only cystic fluid, so the tumor must be benign. But then he came out with this- “Oh, but you need to take thyroid medication for the rest of your life.” Typical doctor. Like it’s no big deal I’m on some medication for the rest of my life.
He put me on Synthroid, a thyroid hormone. Basically, he was treating me with thyroid hormone replacement therapy. Your thyroid produces hormones which are eventually involved in regulating your metabolism. By replacing this hormone, a message is sent back to the thyroid that there’s enough in your system, so it doesn’t need to produce as much of this hormone. Essentially, the thyroid barely does any work anymore. It’s put on retirement. The theory behind this is by preventing the thyroid from having to do much work, the thyroid nodule will hopefully keep from growing any larger.
So, I stayed on this plan for a number of years. But the move to Crested Butte made me seek out new health insurance and new doctors. In June, I saw Dr. Maruca, an endocrinologist located in Grand Junction. He took one look at my old medical records and basically told me they were a load of horse-crap. My old endocrinologist simply didn’t keep good records. There was no record of the original size of the tumor, to compare and see if it was growing. And I distinctly remember doing two biopsies in Boulder, yet record of the second had mysteriously disappeared.
But, the worst news was that my old biopsy was in fact inconclusive. Dr. Maruca explained to me that to have a true idea of what is actually in a thyroid nodule, solid components need to be obtained from five different sections of the tumor. Well, I remember the biopsy needle poking into my neck five times (how could I forget that!), yet it came back with mere blood smears. There were no solid components. So, in essence, whether the tumor was malignant or benign was inconclusive. Yet, my doctor at the time decided to tell me it was benign. Because of this, Dr. Maruca suggested that I have another biopsy. Believe me, I wasn’t thrilled about having a needle poked into my neck five times again. But, I saw the value in it. Plus, due to my ACL surgery earlier this year causing me to meet all insurance deductibles, the otherwise costly biopsy would be basically free.
I did the biopsy and then went home. I kind of put the whole thing out of my mind. Though, I was expecting a phone call. But, doctors rarely call when things are fine. They just don’t. So, that’s what I assumed was going on. I assumed my test results were fine. But then one afternoon at the end of June I checked a message on my voice mail and it was Dr. Maruca himself. “This can’t be good,” I thought to myself. So, I called him the next morning.
Dr. Maruca basically informed me that the results of my biopsy had come back from the pathologist having a specific kind of cell that may or may not be cancerous. He went on to explain that you can’t tell if this cell is cancerous until you take a larger sample, which would involve thyroid surgery. “There’s about a 1 in 20 chance that it’s cancerous,” he said, “I think you should just have your whole thyroid out.”
The thought of having my whole thyroid removed was not new to me. This was presented to me as an option by my old endocrinologist, although he did not recommend it. Thankfully, I was able to work past Dr. Maruca’s matter-of-fact statement that I need to have surgery to remove my whole thyroid and ask the right questions. He investigated my medical records further. And I did some research on the Internet. With all that is at stake between cancer vs. my metabolism being messed up sans-thyroid I decided that the best route for me was to have a partial thyroid removal.
Today, I visited Dr. Harthorne, an otolaryngologist/surgeon in Grand Junction who will be performing my surgery. I was able to set a surgery date- it will be Monday, August 3rd. And he was able to answer the last few remaining questions I had about the procedure. Based on the research I’ve done and what Dr. Hartshorn explained to me, I will do my best to explain the procedure.
The surgery is done with general anesthesia. They pump your neck full of saline, so this can make your neck very sore. But, this allows them to make a smaller incision which will scar less. The saline will be used to expand the working area. They will take great measures to protect my parathyroid gland, which regulates calcium levels, and also my vocal cords which can easily be damaged in this surgery. The surgery will last somewhere between 1.5 – 3 hours.
The thyroid is divided into two lobes on the right and left side of your neck, connected by something called the isthmus. Since the tumor lies my left lobe, this half will be completely removed. Thyroids are a unique organ in the sense that they have a huge blood supply. Blood is always being fed to the organ. This makes removal of a partial lobe basically impossible. They can’t remove just the tumor itself because the thyroid tissue around it will bleed too much. This internal bleeding can cause a lot more problems than actual removal of the thyroid itself. So, if a tumor is found in a lobe, the whole lobe must be removed.
Remember, the reason why they are removing this left thyroid lobe on me is to be able to take a better look at the tumor. They want to determine if it’s cancerous or not. So, they will take out the lobe, remove the tumor, instantly freeze it, and then slice it. This is called a “frozen section”. They will send this frozen section down to pathology where they will run tests to decide if it is benign or malignant. If it is malignant, the other half of my thyroid will need to be removed, on the spot. If the tumor is benign, or even if it is questionable if it is benign or malignant, they will leave the right half of my thyroid in tact. Here, there is a small risk that I may need to have another surgery to take out the right half of my thyroid – if the tumor is questionable, and they have to do more extensive tests that cannot be done within the timeline of my actual surgery. But, this is a small risk.
When the surgery is all said and done, there are risks of certain side-effects. Aside from the normal problems with possible nausea and infection associated with all surgeries, I will likely have trouble swallowing and eating for a few days. But there are two relatively common side effects that pertain directly to this surgery. One is damage to the parathyroid gland. This gland regulates calcium levels. There is one of these glands on each side of your neck. With a partial thyroid removal this is hardly a problem, because if one parathyroid gland is damaged, the other just takes over. But, another main risk is damage to the vocal cords. Vocal cords can be severed in this surgery, which results in completely losing the voice, permanently. But, this risk is rare. More common is damage to the vocal cords which causes them to become temporarily paralyzed. It is not uncommon for people who’ve had thyroid surgery to lose their voices for somewhere between 1 and 3 months.
I must say, this vocal cord thing is my greatest concern. I suppose I can handle losing my voice for a couple of months. But, to lose it permanently would be devastating. I mean, I can’t be a teacher if I can’t talk. It just won’t work. But, the doctor saw my concern about this and elaborated . He explained that there are two vocal cords and the likelihood of both being severed is very very rare. He said that the vocal cords work by kind of squeezing together back and forth. If one is severed, a gap occurs which prevents the full squeezing from happening. But, a plastic implant can be surgically placed there to allow the other vocal cord to squeeze it instead, making it so you can have your voice back. Knowing this bit of information has calmed me considerably.
If I have half of my thyroid removed, I don’t need to spend the night in the hospital. But, if it turns out that I need to have both lobes removed, I will have to spend one (or more if my calcium levels are not right) nights in the hospital.
Generally, the first few days after the surgery will suck, obviously. But, it seems that most people continue regular activities within 2-3 weeks after surgery.
Check back, for more blogs about this. I’ll be doing some blogs about how the actual function of the thyroid as well as what my life will be like with only half a thyroid.
For those who care, I found this to be one of the best sources of information about the surgery I’ll be having.
Texas Center for Facial Plastic and Reconstructive Surgery
Thanks for reading!
Hi Nancy, It is scary but you are right. This is a very treatable cancer so I concur with your thoughts. If you had to have a cancer, this one is the one to have. I had a left lobectomy in March and it turned out to be cancer which no one expected since my doctor told me right after surgery is looked benign. So in a few weeks, I will have a complete thyroidectomy. I will have a radioactive iodine treatment, have a full body scan to see if there are any thyroid cells left and then go from there. I am kind of bummed out about having to stop my thyroid medicine until I have the R I treatment. I hear I will be very tired. I just hope I don’t gain weight. I have an appt with an oncologist in a few weeks so I should know more. You will be suprised how fast you will recover. I will keep you in my prayers and let’s keep in touch. I try not to think of it and put it on the back burner until the day or surgery. That keeps me from going crazy. ;0
Well, I had my surgery done yesterday. You are right, Melissa, the waiting up to the operation and thinking everyday is it or is it not cancer is just the worst! The surgery went well. They took out the large nodule from the isthmus and a chunk of the left thyroid it was attached to. The pathologist deemed them not cancerous at that time but they look at the rest of the nodule during the week and make a final determination. But it looks like it wasn’t cancerous and I have still have part of my thyroid. Maryellen, I’m still a little nervous until I find out all the results next week even though the doctor felt strongly it was benign. Did they have a pathologist look at it during the surgery? The nurse who took care of me yesterday has a similar story like yours. She had a left lobectomy many years ago with no cancer and then years later had a full thyroidectomy since cancer was found at that time. That was many years ago and she is doing fine now and leads a normal life. I cannot believe how many people I have talked to who have had this or know someone who had it. I will pray for you and will keep in touch.
Nancy- Glad to hear the surgery is done! I am pulling for you that the original benign diagnosis remains true through the week. Let us know! Here’s to a happy healing
-Brittany
Saw the doctor today. Good news – no cancer! I didn’t remember everything he had told me about the surgery that day but he took out my left thyroid and part of the right because of a suspicious nodule. But none were cancerous at this time although they could have been at a later time if I didn’t have this surgery. Anyway, my next step is an endo to find out about meds although the doctor says the right thyroid should eventually take over and I might not need meds. I am still not up to par which he says is normal now that I am missing part of my thyroid. Mary Ellen, please let me know how you are doing.
Nancy- So glad to hear that the tumors weren’t cancerous! I am sure you feel tired since your thyroid is not functioning fully. I have had to take synthroid since my surgery and I have not been able to go off of it. Feeling tired is a #1 symptom of low thyroid hormone levels, so chances are, you’ll start feeling better once you do go on the meds. Good luck to you and keep us updated!
Thanks to all the well-wishers. I appreciate it very much. Nancy – I am so glad that everything was benign and you can move forward and feel better soon. I met with the radiation oncologist today. After my next surgery (complete lobectomy) I will go off of my thyroid medicine and go on a low iodine diet. Maybe without meds for about three weeks, depending on my TSH levels. It must be at 30 to proceed with the Radioactive Iodine Treatment. The oncologist said without meds, I will feel like crap, no energy, lethargic, hard to focus, memory loss. Wow, and I thought I was already going through pre-menopause! The fun only gets better!! LOL. My surgery is next week so I will let you all how it goes. Just a night stay and go home the next day. I will be off work for about a week so I am looking forward to chilling out. I am so glad we have this forum. It is really helpful to read what others are experiencing so we know what to expect if we happen to be in a similar situation. Thanks Brittany!!
Maryellen- Good luck with your radioactive iodine treatment and surgery. I hope all goes well for you! I’m glad this “forum” has helped all of you! Actually, it’s just my blog, but I love that there are so many people who are finding us here. In fact, all of this has shown me there’s a need for a support-system for people undergoing thyroid surgery (both pre and post op) so I have been inspired to create a true forum. I’m in the process of creating this new forum, but it may take another month or so (I’m very busy as a teacher and also planning my wedding which is in 2 months). But, the forum will be called thethryroidchronicles.com. I will let you all know when it is up and running!
Brittany – you rock!
Hi Brittany,
How are the wedding plans going? Not too much longer huh?
-ME
Wedding plans are going well! Less than 2 weeks
Hi girls!
Tomorrow is my surgery to have the left side of my thyroid removed. I’m very nervous but the Dr. assured me that if I chose not to have the surgery, I would have to endure that awful biopsy 4 times a year. No thank because it was horrible! I guess they had trouble extracting much of a sample so they stuck me quite a few times in my neck. I do appreciate being able to read about your experiences with this since I really wasn’t sure what to expect. I didn’t ask many questions because I really wasn’t given a choice here. I am tired quite a bit and I asked the Dr. if it could be related to this and she said that she didn’t think so but I really can’t come up with any other reason except for perhaps, stress. Thanks again for sharing your experiences!
Hi,
How is married life going? Will you post some weddng pictures? -ME
So happy you received good news, Brittany. Did you have any symptoms before visiting any doctors, such as fatigue? I’ve been feeling completely wiped out lately and have had all the the thyroid tests done but everything came back normal. Karen
I am scheduled for surgery in 2 weeks for the removal of one thyroid lobe because of inconclusive results for cancer. I am 70 years old and work a full time job and part time job in order to be able to retire in 2 1/2 years and be able to support myself on a very simple level. I am so afraid to have this surgery for fear it will reduce my energy level which will not allow me to work the way I now am. I have no relatives to fall back on. Questions: Does a second biopsy make sense? For any one there who has had a thyroid lobe removed how were the results…in terms of energy level or anything else? I am thinking about cancelling surgery because I understand the odds of not having cancer are in my favor. Any feedback will be welcomed. Thanks, Shirley
Hi Shirley, You are asking a difficult question that only you can truly decide, advised by your doctor. My results also came back inconclusive for cancer, and when my thyroid lobe was removed, it indeed was not cancerous. There is a large amount of research out there that says a lot of people, especially women, have thyroid tumors and never even know it because they are benign and small. A second biopsy can make sense, although it will likely yield the same results. As far as your energy level is concerned, you may find yourself a bit sluggish at first. But, that’s where the thyroid supplements come to play. If the tumor is not cancerous, you will only have one lobe removed. Some say the other lobe can take over for the whole thyroid, but I didn’t find that was the case. I help the remaining part of my thyroid out by taking thyroid supplements. If your tumor is found to be cancerous, they will remove the whole thyroid, in which case you will definitely need the thyroid supplements. My biggest piece of advice to you is to get a thyroid hormone blood test before you have surgery. Know your T3 and T4 levels. That way, after the surgery, they can regulate the thyroid supplements to help you reach your normal levels. You may notice yourself being a bit tired until all this gets straightened out, but it can get fixed. I didn’t notice a huge difference even when my thyroid levels were low. I just noticed I was more tired and was eating less, but it wasn’t a huge deal. Even after my surgery and with thyroid supplements, I live a normal, active, and athletic life.
Does anybody have advice about the need for thyroid medication AFTER thyroid lobectomy? I had a right thyroid lobectomy three months ago and have been feeling mostly fine. However my thyroid levels have been going down and my doctor is now suggesting a low dose of thyroid replacement medication before I start getting symptoms which makes sense but is a bit intimidating. I will follow my endocrinologist’s instructions but wonder if anybody has any advice or suggestions? THANKS!
I had my entire thyroid removed in 1992. I just want to say I feel better and mine was cancer so I had to do radiation but all is well as of 2011. I want to warn all that over the years there are side effects. I have had weight gain, blood sugar issues, hair loss on my head and hair gain on arms and face, mild vision issues, i did lose my voice all but a whisper for the first year and a half, chronic constipation, and early menopause. My periods stopped for 2 years and then I bled solid for 8 months and for the past several years spot a couple times a year and have hot flashes daily. The doctors tell me it is all thyroid related so I have tried everything. My best advice to all having their thyroid removed… Find a great endocrinologist and take a daily multi vitamin with extra calcium. The synthroid prescribed will deplete your calcium, and good luck. I also drank an aloe Vera drink that seemed to ease the side effects and gave me beautiful skin for e first few years. Don’t want to be a downer but I want you all to know in case you start to have these effects.
Hello, I had a left thyroid lobectomy on Nov 7, 2011. Prior to that, I had the biopsy done which showed no cancer; however, after surgery, the pathology test came back cancerous. I was scheduled to have the right thyroid removed, but due to my left vocal cord being paralyzed from the first surgery, my doctor wants to wait until it awakens. I am a nervous mess because I feel that the right thyroid needs to be removed and that I need to be given the RAI. My doctor states that it was only a “small” amount of cancer found, “0.03cm” that I have time to wait. I have an appointment this Thursday, Jan 5, 2012 to see if the vocal cord is awaken and if so, I am scheduled for surgery on Jan 9, 2012; but if not, I will have to reschedule. Have anyone experience the vocal cord being paralyzed? Thanks…scared in Hawaii!