Thyroid Awareness Month – Life After Thyroid Lobectomy
Hey everyone! So this blog post is not my usual type of post and it was a post that I had said I was not going to write about because it is just something personal. The month of January is Thyroid Awareness Month and I did not want end January without talking about this topic. I typically do not write about personal things on my blog, but in this day an age everyone is going through something. You never know if there is someone following you that may be facing the same thing or there may be some of my follower just curious on what exactly happened to me and what is going on with my thyroid. So this post talking about what led up to my removal of half my thyroid which in the medical world is called having a thyroid lobectomy or hemithyroidectomy and all about my not cancer but cancer diagnosis.
THYROID AWARENESS MONTH
January is the official month of Thyroid Awareness. Many people may not know what your thyroid is or what is its function but it is a very important part of your body. The thyroid is the butterfly shape gland at the base of your neck. It plays a huge role in the function of your heart, brain, liver kidneys and skin. Many people know it as the gland that regulates your weight and body temperature. Thyroid Awareness month is bring awareness to”check your neck”. If you ever gone to the doctor they check your ears, nose and you may notice them touch your neck in various places. They are feeling your thyroid gland to see if there are any abnormalities. This is how my journey to thyroid surgery began.
My gastroenterologist was very thorough and though I was coming in for my stomach, he did the full check and felt something that seemed out of place in 2015. He was not sure what he was feeling and admitted it but advised me to see an endocrinologist to be sure. I happened to have another visit at a different doctor and asked his opinion on what he felt. He said my neck was fine he did not feel anything and sometimes doctors makes something out of nothing. But since there are thyroid issues in my family, I decided to make an appointment anyway.
So during the appointment my endocrinologist did the neck check and said he did feel something but sometimes it can just be the bones and tissue in the neck. However given family history, since he sees on my sister, he wanted to do a sonogram just in case. I have had sonograms many times and at times you can tell by their movement of the device when they have found something. They are never allowed to tell the patient anything, but she went from being a little chatty to being quiet. I knew there was something. Sure enough there was two small nodules on the left lobe of my thyroid. They were too small to biopsy it and my thyroid levels were fine so the protocol was to repeat in 3-4 months. The next one in 2016 showed that it grew slightly and slightly elevated levels but still not enough to do anything. So we waited 6 more months to repeat. No change. So I just scheduled appointments every 6 months to be safe.
THE SEVERE MIGRAINES
July 2017 I began to have very severe migraines. I believed that the “stresses” in my life were the cause. These migraines were EXTREMELY bad. I never felt such pain in my life. I ended up having to file for FMLA for the sake of not losing my job because I was missing so many days from work. I had seen so many doctors and given so many medicines, shots in butt, narcotics – NOTHING put dent in the pain. The pain was a 20+ on a scale of 1-10. There were days that I thought death would be so much better. I could not walk, I could not think, I was vomiting just pure misery.
I had every scan and test done under the sun and nothing showed anything – no tumors in the brain or brain scars (which I have but no new ones., I had my vision checked since I had recently found out I am at risk of macular degeneration and glaucoma but everything came back fine. The one thing that we did not check was my neck. The migraines shot through one side of head through my neck. So just as a last resort I told my, endocrinologist what was going on and he ordered another sonogram in early September though it was not time for another one. The results – the nodules had grown substantial from my previous visit and they look concerning. So he ordered a biopsy at Baylor.
THE BIOPSY & CANCER POSSIBILITY
So at the end of September, I went to Baylor to have fine needle aspiration. I had to be awake for the procedure. I was definitely nervous because I do not like to be awake for these types of things especially when it is so close to my face. They numbed the area, which hurt, so I would not feel anything. They took various samples of each nodule using an ultrasound machine to guide them to the nodules. It was a 3 man job – a nurse to take the samples in the test tubes, A tech to guide the ultrasound machine and then the surgeon to extract the tissue from my neck. Only one time during the procedure it kinda hurt because I believe he had to enter from an area that they did not numb so well.
The waiting period was the worst. Then I got a call that the results came back but the results did not give a definite result. It was not clearly benign nor it was not exactly malignant either. So they had to send it to a company called Afirma. Afirma is a company that does a genomic testing for indeterminate results from biopsy. They take the tissue and look at it more in depth at the genes. It took a couple of weeks for the results and at 3:00pm while I was at work, I got the phone call.
THE PHONE CALL – CANCER
My doctor is really cool and tells me everything over the phone or through the messaging portal. I get a call from HIM and not his nurse saying that he needs me to come in and if I could come in today. I already knew that was not a good sign. My coworkers said no worries it is probably nothing but I knew. I told them he never has me come in nor calls me it is always his nurse and it is over the phone. So I left my job early and went to his office with my husband. The result was that the results gave about a 50% chance of cancer, but they cannot say for sure. His recommendation was surgery for the removal of half my thyroid gland to test it. This is what is called a thyroid lobectomy or hemithyroidectomy because its only half and not a full removal which is called a thyroidectomy. I was confused on why I need to remove half – why could not they just take the nodule itself. He explained these nodules have now grown to be vascular- rooted in my thyroid. They cannot just shave it off. They have to take the whole thing to test it case there is cancer and it spreads. With the percentage that Afirma gave that is considered a high percentage he said. If they said 20% then he may not recommend but that percentage is stating that they think it is or found something that is pointing to cancer. But he told not worry it is simple surgery not thing major about 45 minutes and I won’t stay overnight. He recommended me talk to a thyroid surgeon. We scheduled it the next morning. That appointment changed everything.
After speaking with the surgeon, we realized how serious this surgery actually was and I was afraid. The surgery was going to be 3 hours and not 45 minutes and I would have to stay overnight. I have never stayed overnight at a hospital before nor been under general anesthesia. Not only that what made me more scared was I would not know any of the results until I woke up and I had to give big consent before the surgery began. The surgery was to remove the left lobe. They will remove it and team will test it right there while I am still open to see if it is cancer. If it comes back as cancer, I would have had to already given them consent to not only remove my right half and they would take my lymph nodes too. They said that they cannot take me up to tell but I had to consent ahead of time. The other possibility was that they test it and they are not 100% sure. They send it to a lab and if it test positive then I would have to repeat everything to have the right side and lymph nodes removed.
I did not want my entire thyroid removed. No thyroid leads to alot of weight gain that can be managed with medicine but it means I would be on medicine for life. I am already bad about remembering to take vitamins everyday how would I remember to take thyroid replacement pills? Being in social media, you are in the forefront. The thought that I wouldn’t be skinny Cindy just was overwhelming. Then the risks and complications were that where the thyroid was located they could accidentally cut my parathyroids- the glands that produces calcium. It happens sometimes. Or worse they can get too close to my voice box and I could have permanent damage and with a whisper as a voice. Then the scar. I have seen some photos of people looking like Frankenstein across the neck. I scar so easily and always have a dark spots with any little bump. So now getting my neck sliced open was just another anxiety for me. I had soo much to think about.
So I had my surgery scheduled about a month away November 7, 2017. Preparing for a major surgery was no joke. There are blood tests that are done. I had to prepare my house and do a deep clean to be sure everything is as sterile as possible and especially since we would be having visitors. Also I had to buy foods for my diet that I would be on. Because they will be cutting close to my throat, I would be on a liquid diet for a little bit. So I loaded up on soup, Popsicle, juice and soft things. My friends in my old and new congregation was very supportive and brought me things as well.
The day of surgery I was quite calm. I got dressed in comfortable clothes. I wore a hoodie that zipped in the front. They recommended to not wear anything that I would have to pull over my head because I would have a drain from my neck. They also stated no makeup which I was not happy about that. That is because they would have to incubate me and tape it to my face. If you seen a medical show, that is when the person is not breathing and they have to shove that tube down their throat and “bag em”. I never go anywhere without makeup. I did put just a little bit on lightly and wore my glasses vs contacts. My surgery was scheduled at 12pm so I had to be there at 10am. My husband, mom, brother, best friend, an elder and member of the hospital liaison committee came to support me that morning. I got checked in and signed paper work and we waited for them to call me to the back.
They called me back and they told me to get completely naked and where this gown. I was not expected that. I said what about my underwear. She said if you were not born with it, take it off. Then the IV guy came and that is when it hit me. I was soooo scared and shaking so bad he barely could get the needle in. As different people came in and out of my room and they allowed my family come in one at a time before they wheeled me back, I began to shake even more. The surgeon came and began to talk to me and then I just started crying. I wanted to back out and change my mind. She assured me that it will be ok and she has done this many times and I will be asleep and not remember anything. So I said my “goodbyes” and prayers with my family and my best friend and they wheeled behind the double doors.
I did not know that I would be awake for that. My little procedures I had in the past I never been awake to go the actual room. In movies and shows, it seems like they are already asleep by the time they are in the room. I actually saw all the nurses and the tables and everything and actually had to get on the operating table myself. I was still shaking and the nurse said “no worries it will be ok. I have been with Dr. Zhou on these regular Tuesday thyroid surgery days for a long time and you are in good hands.” That was the last thing I remembered before my arm got hard when the anesthesia was suddenly injected into me.
It felt like I was out for about 30 minutes and then I woke up in the recovery room. There was a nurse there and my first question was ” Is it cancer”? She said she could not tell me that but the doctor would be in shortly. Then they brought my mother in and I asked her. She said no, they do not think so but they sent it to a lab for confirmation. My throat felt so raw and I was in a lot pain. I had a lot of mucus and spit alot the first two weeks. I did not have a voice. It was whisper which I common. They stated in 2-3 weeks I would have my voice back. I was able to get morphine but it did not do much for the pain. I think it has do no with the pain I endured with the migraines. I had so much pain medicine and narcotics that I felt that they just stopped working. The pain was rough but the migraines was actually much worse. Walking was difficult. They had to give me walker. The nurses kept telling me “remember we did not have surgery on your legs. You can walk”. But I could not straightened my neck and my shoulders were very tight it looked like I was shrugging. I already have scoliosis so I think that is why I probably had more difficulties than normal.
They had to walk me to use the bathroom. This was something I did not know would happen. General anesthesia stops EVERYTHING. Bowel movements, urination. It took me about 5 minutes for the pee to actually come out. It was so weird. I was pushing but nothing came out even though I had to pee. Having an overnight stay at the hospital is no fun. I thought it would be a bit relaxing but nurses are coming in your room seems like every 5 min to check on you and the vitals. I really couldn’t sleep. Then they make you walk.
This time it was around 11pm. She helped me out of the bed and I used the walker to walk. I began to walk and tried to walk fast which I think it was a mistake. I suddenly felt nauseous. The nurse told my husband to wait with me and she will get a bag. Then something weird happened. I felt really weird. I told my husband I don’t feel well then I became heavy and could not stand up and my husband caught me. I remember hearing my husband shouting for a nurse that something was wrong. The nurse runs over and I hear her say what is wrong. But I could barely hear her. I told her faintly that it is getting dark. I remember seeing a dark like cloud from all angles of my peripheral vision closing in. She said something else I said faintly twice “I can’t hear you I can’t hear you.” Then it went dark. Her voice sounded like she was miles away. I could hear her yelling to another nurse that she needed a wheel chair fast and she rushed me back to my room and had me hooked up and gave me oxygen. My levels came down and I was passing out. She thought it was because I had peed, given morphine and walked all a the same time and it was too much for my body.
NOT CANCER BUT CANCER
I had a follow up appointment to get the drain out of my neck and to find out the final results about the cancer. I dreaded this appointment. This drain in my neck had to be removed. It was put in there with stitches while under anesthesia. Guess how it is coming out? Without anesthesia. I fought that surgeon about giving me lidocaine around the area before pulling it out. I had seen YouTube videos of grown men getting it pulled out and they dropping F bombs because it hurt. The video showed a few inches of the drain actually in the neck like maybe 2-3 it seemed like. After threatening to not show up for the appointment and finding another surgeon who will make me comfortable during the removal, she finally stated ok she will give it to me. I never got an explanation why could not have it but just that noone has ever had it done before and it is really quick.
The drain has been moving around in my neck this whole time and it hurt just wiggling. Imagine it being pulled out. She did the lidocaine and said she is numbing the outside but you still may feel it in the inside. I asked one more time how many seconds will this take? She just said just a few seconds. I became overwhelmed and began to cry. I have been through so much pain and did not want to feel anything. Do you know what happened? It took more than a few seconds! It was a lot longer because it did not come out as easily and fast as she thought. She actually had a little bit of a tug of war action. If I was not not numb, I would have felt that! I am glad I stuck to my guns and demanded the lidocaine.
I remember the appointment day I had to wait in the waiting room longer than normal. I did not know why but later found out from my endocrinologist. I was told that it was benign which is not cancer! YAY it was good news and I told everyone including on Instagram that I did not have cancer. However, she gave me the official document and it said something else. My diagnosis stated this: “Noninvasive follicular thyroid neoplasm with papillary-like nuclear features formerly known as “encapsulated follicular variant of papillary thyroid CARCINOMA!” Umm carcinoma meaning another word from cancer? So that morning the surgeon received results and she panicked a bit. She already told me the day of surgery that no cancer and now she sees a diagnosis name that she has NEVER seen before with a former name being a “carcinoma”. She spoke to my endocrinologist and asked him what was she suppose to tell me? What does this mean? So they had to call the company to find out if this is cancer or not cancer.
This is what I found out. If I were to have this surgery just 1 year prior, I would have been given a cancer diagnosis and gone through cancer treatment. What has happened over the years were researchers studied about 100 patients with the encapsulated follicular variant of papillary thyroid carcinoma diagnosis who had the same procedure that I had. Removed the lobe where the nodule was. They were not given cancer treatment. They watched them over the years. No-one ever died, the cancer did not come back nor did it spread. The cancer just stayed within the confinement of the nodule. So they changed that diagnosis to a “benign” diagnosis. The reason also written in my document stated this: “Revision of the currently accepted nomenciature has been recently been proposed to change the name of the tumor from encapsulated follicular variant of papillary thyroid carcinoma” to noninvasive follicular thyroid neoplasm with papillary-like nuclear features in order to reduce the psychological and clinical consequences associated with a diagnosis of cancer“. In others words (where I read in other articles) to eliminate the need of unnecessary cancer treatment.
THYROID RECOVER & TODAY
I was out of work for 2 weeks and I did not have a normal voice for about 1 month. It was whisper for the most part. I could not raise my voice, sing or anything. I could not sit up straight either which caused tension in my shoulders and back. It was so uncomfortable and in pain. I had to wait 8 weeks before I could go back to the chiropractor or workout. The scar healed nicely. They did not stitch me but used surgical glue that fell off piece by piece on its own after about 8 weeks as well. It bothered me having that surgerical glue and scar area and I thought about walking around with a scarf and airbrush them out photos I posted but I did not. It is something I lived with and overcame. And I was just going to flaunt it.
Since the surgery, the thyroid half that is still present has slowed down. I have noticed energy level gone down and weight gain though being on diets and intense exercises. I had been put on a small dose of thyroid medicine which has helped. Also taking proper vitamins to help boost my metabolism as well as probiotics are a must. I have started to take HUM Vitamins which has a lot of good vitamins to help my needs. I recommend you try it out for yourself and buy online because you get a 25% discount when you buy 3 together which I bought 4. For a $10 DISCOUNT use this code 196EE4 and shop here!
So if you are about to go through what I went to or if you are in the beginning stages, I hope this post was helpful to you. It was a scary time but as my doctor says, you can live without your thyroid and if it is cancer, just know you got the good cancer- a cancer with a high survival rate. Try not to worry too much. If you have any questions, feel free to email me or dm me on Instagram!