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Thyroid Disorders Message Board

Thyroid Disorders Board Index

Hi everyone. I'm so excited today because I got the best news ever. Your thyroid nodule was benign. You see, I had a partial thyroidectomy last Thursday and today my surgeon called me to tell me it was all good, this was over, and I did not have cancer.

But this is not why I'm posting this or why I joined this community. I want to help others with my story. While I know that not ALL stories will end up like mine, the vast majority could and I know that I have been on these message boards just looking stuff up on and off for almost 5 years looking for answers and I didn't find them. Maybe I can help you!

It all started when I found a little lump in my neck that I thought was a swollen lymph node. I went to my doctor and he thought the same thing and sent me for an ultrasound. The lump turned out to be a 2.3 cm thyroid nodule. I went to an ENT after that, and he had it biopsied. The FNA came back with hurthle cells. It was unclear if it was cancer or not with those cells as they can be found with both benign and malignant tumors. He sent me to an Endocrinologist, the BEST Endo in the entire world, I'm convinced now. Please, if you are in Orlando....PLEASE e-mail me because I'll give you his info. Anyway, the Endocrinologist would have preferred removal of at least half of my thyroid at that time, as that is the standard of care when you have hurthle cells. But I was terrified to have my throat cut open. I sing, and I was terrified of that surgery. He said we could wait and watch it and get Ultrasounds every few months to check for changes or growth, but that the only way we would know for sure was to have it removed. So, even though I was scared, I got a referral to the BEST thyroid surgeon in this entire state (I'm convinced of this) and went and saw him. He confirmed what my Endo said and said the only way to know if I had cancer for sure was to remove at least half of it. I scheduled surgery, but let fear get the better of me and 3 days before it was time to be operated on, I ran to my Endo and told him I wanted to watch it instead. He agreed to that and so I cancelled my surgery.

We watched the nodule by ultrasound since 11/2006. Every 4 - 6 months, I had one. In the first 2 years there was very little growth. At first the Endo and Surgeon said my chances were 80/20 favoring benignity. After 2 years of very little growth, the endo said my chances were better than that. After 2 years, when I would get the Ultrasound, there was some growth. About 3 mm or so each time, but steady growth. The Endo kept watching it still, however, until this past December, when he said it was time again to do another FNA. We did the biopsy and it came back the same as the first one. With hurthle cell changes. Actually the diagnosis was Follicular Cell Neoplasm I believe. Still not sure if it was cancer or not. The doctor said, let's just watch it and in 4 months we will repeat Ultrasound. Now, I had been getting my Ultrasounds every 6 months as opposed to 4 when there was signs of very little growth. Now we're back to every 4 months because of the steady growth. Mind you, this never grew quickly or by THAT much, it was just steadily growing. What started out as 2.3 cm in 11/06, was now 3.4 cm in 12/10. After this second biopsy, we waited 4 months and repeated the Ultrasound. The technician said there was no growth from the previous one so I was really ecstatic. However, she was wrong. DO NOT take the word of any radiology technologist. They do not understand always, the criteria by which change is significant (or not). I went to my Endo thinking it was all good and we were gonna just keep watching it and he shocked the living daylights out of me. He said it had grown more that ever before. By 5 mm. That turned out to be wrong though. I repeated the U/S and it was only 3 mm. But regardless of that, the Endo said he was not comfortable watching it any more. That I needed it to be removed. I scheduled an Appt. with the SAME surgeon (thank God he agreed to remove it again since I cancelled last time right before the surgery) and he said the same thing as the Endo. It was time to remove it! Because of the steady growth for the past 1 1/2 years after no growth the previous 2 years. I scheduled the surgery right away. In fact, from the time I got the latest U/S result until the time I had surgery, I believe it was about 1 month. I asked the surgeon to PLEASE only remove one side unless he had a strong suspicion on Frozen Section during the operation that it was cancer. He agreed. I wanted this because half a thyroid could still function and you MIGHT not have to take thyroid medicine for the rest of your life if you still had half a thyroid. Also, I would only be risking half my vocal cords and parathyroid glands (the calcium producing glands) if I only removed half. Obviously, I am still wanting to roll the dice. The surgeon made me understand VERY CLEARLY that if it turned out to be cancer, he would have to go back in and remove the other half of my thyroid. I wanted to roll the dice. He did tell me and so did the Endo, that they did not think this was cancer. So I had some hope that this was the best decision. Only removing half.

You have to know that I CHOSE TO ROLL THE DICE WITH MY HEALTH and watch this thyroid nodule for 4 1/2 years instead of removing it at the beginning as my Endo & Surgeon advised. This is not the decision most people make, or should make in my opinion. If I had had cancer, I would have let it grow for over 4 years which could have made it harder to treat.

Anyway, I had surgery last Thursday. Prior to going into pre-op, I was waiting outside with my boyfriend and when the pre-op nurse came to get me, I started balling like a baby. It took some talking to and coaxing, but she was so wonderful and she got me to go back and get ready for the surgery. I was terrified! The Surgeon and Anesthesiologist were the MOST terrific team anyone could have. I was told that so many times at the hospital. I stayed overnight at the hospital because that's what my surgeon wanted. I had no post surgery complications. I never even took a tylenol. That's how minor the pain was. There was a little swelling and redness around my incision and to the bottom of my neck and even a little on my upper chest. I felt weak but good for the most part. I could only have a full liquid diet the first 24 hours (jello, cream of wheat, ice cream, hot chocolate...not too bad at all). My appetite was great, I was even hungry the night of my surgery. LOL! My neck was not really tight or sore at all. My throat a bit uncomfortable of course, but not bad enough to take pain meds. Although my doc did prescribe them in case I needed them (of course I did not fill the prescription). The incision is the most incredible looking thing I've ever seen. I went to the movies 3 days post op (Sunday) and I don't think if people weren't looking for it, they would have even noticed it. The surgeon put the incision right in a natural crease in my neck and it's healing wonderfully. You need to know. I'm only 5 days post op. I'm still lounging around in bed. My body does not feel totally normal yet. I get a little weak feeling at times, but for the most part, I feel that I'm 75% back to normal. And this is not even a week out yet.

So, I was worried whether this was cancer or not....OF COURSE....and because my surgery was on Thursday last week and it was a long Memorial Day weekend, I never imagined my biopsy results would be back yet, but I called the surgeons office and asked how long it usually takes, so I wouldn't sit around for the next few days worrying myself into a frenzy. They told me they thought they were back already and that they would have the Surgeon call me. Of course, all kinds of things started running through my mind, like oh no, it's back so soon because it's cancer. They're gonna have to go back in and take the other side out. I waited for about an hour or so, the surgeon called and said in his very matter of fact, soft way. Your nodule was good. It was a benign nodule. I cried, screamed in his ear and asked...."so this is over" and he said "yes....I'll see you Friday".

My appointment for my check up post surgery after 1 week is this Friday and I am looking forward to giving my surgeon the biggest hug and thank you he's ever gotten. He is the greatest artist alive in my eyes.

Here's why I joined this Healthboard today. I've seen so many postings about this over the past 4 years. They have confused me. I didn't know what to do. I was risking my health for years out of fear. If I had this to do all over again, I would have done what the Endo and Surgeon recommended at the beginning. As well as the ENT and my PCP. I would have had it removed, if I knew then what I know now. It would have been hard, but no harder than it was almost 5 years later. I wouldn't have risked my health for something I was ultimately going to have to do anyway. That's what I wanted you to know. If you have hurthle cells in your nodule, and you in all likelihood will have to surgically have it removed one day...think twice about risking your health and having to go every 4 or 6 months for Ultrasound, not knowing what it was going to show. All of that is not worth it when in the end, you could and most likely will (because the odds were always WAY in my favor) be like me. And all of that worrying and risking my health was for nothing. My nodule was benign and I am over the moon now and I could have saved myself all of that agonizing.

And lastly, what if it were cancer????? What would waiting almost 5 years had done to my overall prognosis. As any doctor will tell you...thyroid cancer, if you have to have cancer, is probably the one to get. Because when caught early, most types are very curable. But waiting 5 years could make that another story I suppose. LISTEN TO YOUR DOCTORS. They know!

Good luck to any of you that this might have helped a little bit. I'd love to hear your stories.

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