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  • What a rollercoaster!

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    Old 11-23-2008, 05:36 PM   #1
    KoalaBears's Avatar
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    Unhappy What a rollercoaster!

    Hi Everyone!

    I have been on a heck of a rollercoaster ride for about 2 months now. I had noticed what I thought to be my thyroid appearing a little enlarged over the summer months. I went to my PCP in September and labs were ordered as well as a thyroid ultrasound for what appeared to be a very enlarged thyroid. The results showed a goiter but my labs were all within normal limits. My pcp told me that some times people have goiters without having anything wrong with the thyroid and we would just monitor it. I was pretty insistant that either more testing be done or he give me a referral to somebody that might be able to help me. I saw the endo about 3 weeks later and he didnt so much as look at my labs... looked at the ultrasound and touched my throat and immediately said I needed to see a surgeon because it had to come out. He said that goiters are not usually firm nor are they the size of mine without having some orgin to them. He was concerned about cancer or a tumor on the thyroid itself. I was in the surgeon's office monday... he was not too impressed with my thyroid... told me that since I was having complications (breathing, swallowing, etc) that he would remove it but it wasnt emergent and he said that it was unlikely it was cancerous. The ultrasound did not show nodules, etc and it was characteristic of a goiter which is usually not cancer. I scheduled my surgery for about a month out just to give myself time to get things scheduled at work.... they also did a CT scan just because the left lobe margins did not seem clear.

    I had my surgery on Tuesday. I was a nervous wreck and always had an unsettled feeling about it. My surgeon, who I honestly feel is probably one of the best in my area, came in that morning... answered last minute questions... told me the surgery would take about 2 hours and that the CT showed a goiter like we thought... really kinda put me at ease.

    Waking up from surgery was not so much... my surgery was at 1030... I got out of surgery at 315 that afternoon... my surgeon was beside my bed to tell me that things were a lot more difficult than we had planned for but it was be explained later. I had two drains in my neck that were both hooked to suction and a ton of pain. Finally got to where I could see my family as we awaited my hospital room and was told that my thyroid was cancer... but it was atypical. My thyroid was every bit the size of a human heart and had wrapped around my esophagus... the surgeon said that was sticky and had displaced everything in my throat. He was amazed that I could breathe. He did remove 4 lymph nodes.

    I was hospitalized for 2 days... got my last drain out Saturday morning... and have done fairly well with pain. I was told that I would probably have a good deal of pain because of just the difficulty of surgery and removal process. Holding my head up seems difficult and I have a lot of trouble swallowing at times. I use a lot of ice as it seems swelling is my biggest problem.

    I have my follow up with my surgeon on Wednesday... and an appt with endo and radiation onco the first week of December. I was told that I would need PET scans because the cancer was not contained and that I have about a 33% chance of metastasis... however even with mets the RAI treatment at the highest possible dose should work... that final decision would be determined by path reports though. They are not giving me any thyroid hormones so that as soon as I am medically cleared I can go into the treatments.

    I guess I am just very emotional... I have gone from nothing being wrong... to cancer... back to just a goiter... and now cancer again. At 25 and just having graduated and started my career it has def made me look at things a lot differently to say the least.

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    Old 11-23-2008, 05:44 PM   #2
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    Re: What a rollercoaster!

    First, welcome to the board! I'm glad you found this forum as it is an amazing place.

    Second, my heart goes out to you. You really have been through a rollercoaster ride. All I can say is, I am so glad you had the surgery and the thyroid is gone and you do not need to do anymore "wait and see". The next few weeks will likely not be fun as you wait for your RAI but then you will be able to move forward and start feeling better.

    Just take care of yourself now. Get lots of rest....keep us posted on what you find out from your follow up appointment.

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