Very Frightened - has anyone had this experience

Posted by mm5210 @mm5210, Dec 14, 2022

Hi everyone. I’m 6 years post papillary cancer, removal of right module and half of left. Clear margins, no ablation. I’m now 6 weeks into ear pain (originally thought it was in my jaw/tooth). Exhausted, irritable. Doc said could be that pharmacy changed my Levo brand. Then she also blurted out that it could be cancer. She suspects this because of my body temp issues – freezing then sweating. But I’m also 55 and full blown meno. I’m terrified – I have a brand new grandson. I have so much to do, but been too sick past 6 weeks to do anything. Doc changed Levo dose back and said wait 3-4 days.

Should I be pushing for testing or am I panicking? I can’t ask my family as they are currently dealing with impending loss of an uncle to multiple brain tumors. I need a voice of reason.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

@mm5210, oh how frightening. Having had cancer, the fear of recurrence always lingers somewhere in one's thoughts. But we never want it to be true.

I'm tagging @carolinanurse @roya81 @jay88 @lilyann who can offer their thoughts and experiences.

It sounds like your cancer was a low-risk, small papillary cancer and treated by removing only one lobe of the thyroid. As routine follow-up have you had physical exams by your doctor, thyroid ultrasounds and thyroid blood tests? Your blood was likely tested regularly for TSH and thyroglobulin levels. Thyroglobulin is made by thyroid tissue, so after total thyroid removal and ablation it should be at very low levels or not be found in your blood at all. If the thyroglobulin level begins to rise, it might be a sign the cancer is coming back, and further testing will be done.

I know that for your doctor, waiting 3-4 days seems reasonable, but you're frightened and this may seem like a very long time for you. IF it is cancer, things will not change in the 3 or 4 days. But you might ask to also have blood work done. When was your last follow-up testing and blood work done? Has there been any change to thyroglobulin?

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Thank you 🙏 the only test other than free T3/T4 that was performed was TSH which is <0.01. I don’t believe I’ve heard of a thyroglobulin test. These were performed 2 weeks ago when I ended up in emergency because it had been over a week since I could keep liquid of any kind down. Could that be what she refers to as “markers”? There are so many numbers, and my doctor keeps saying my numbers “look off because she’s keeping me suppressed”. It is all so confusing when trying to research and understand just what my numbers should be when I’m told I won’t look normal. I’ve tried endocrinologists, Gp’s, ENTs. Each one tells a different story. I look forward to hearing from anyone else that might be able to guide me in the right direction. I feel like (as I did when diagnosed) I have to advocate for myself and be pushy. I just want to at least understand what I’m being told.

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I had partial thyroidectomy (right lobe and isthmus)) and 1 parathyroidectomy in July and was diagnosed with Hurthle cell carcinoma. I am dealing with a pain that sounds similar to yours however mine appears to be when I tuck my chin or turn my head downward to the right. Sometimes it is very painful and other times it is reduced, but it seems to always be here….I complained of this before surgery but was told it was due to the very large nodule. I can feel a swollen gland in my neck and for awhile I had a swollen gland behind my ear. Although sometimes the pain is worse, it seems to always be present and quite sharp. I just had a Ct scan and ultrasound. Although a lymph node was enlarged and some thickening in the area, the endocrinologist said “everything is fine.” I told her that everything is not fine due to the sharp pain I am having when I turn my head downward. I went to my regular ENT for examination and asked him to look at my reports. He explained that although the lymph node is enlarged it is not large enough so Dr might be waiting. He also said it could be part of the internal healing process and scar tissue forming that hasn’t smoothed down. He gave me antibiotic in case it is associated with infection and told me to continue to follow up on it with endocrinologist. The antibiotic helped with the swollen gland behind ear and appears to have reduced some of the pain in my neck however it’s still there…. Having the pain reduced is very good though!
Maybe your pain is related to scar tissue and not cancer and your recent sickness caused your Lymph nodes in your neck to swell which is causing pain into jaw. It is hard not to worry but I thought that my ENTs explanation for my situation might help calm some of your worry. Definitely worth asking Dr for further testing and the ultrasound and CT scan might help. Good luck!

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@koh

I had partial thyroidectomy (right lobe and isthmus)) and 1 parathyroidectomy in July and was diagnosed with Hurthle cell carcinoma. I am dealing with a pain that sounds similar to yours however mine appears to be when I tuck my chin or turn my head downward to the right. Sometimes it is very painful and other times it is reduced, but it seems to always be here….I complained of this before surgery but was told it was due to the very large nodule. I can feel a swollen gland in my neck and for awhile I had a swollen gland behind my ear. Although sometimes the pain is worse, it seems to always be present and quite sharp. I just had a Ct scan and ultrasound. Although a lymph node was enlarged and some thickening in the area, the endocrinologist said “everything is fine.” I told her that everything is not fine due to the sharp pain I am having when I turn my head downward. I went to my regular ENT for examination and asked him to look at my reports. He explained that although the lymph node is enlarged it is not large enough so Dr might be waiting. He also said it could be part of the internal healing process and scar tissue forming that hasn’t smoothed down. He gave me antibiotic in case it is associated with infection and told me to continue to follow up on it with endocrinologist. The antibiotic helped with the swollen gland behind ear and appears to have reduced some of the pain in my neck however it’s still there…. Having the pain reduced is very good though!
Maybe your pain is related to scar tissue and not cancer and your recent sickness caused your Lymph nodes in your neck to swell which is causing pain into jaw. It is hard not to worry but I thought that my ENTs explanation for my situation might help calm some of your worry. Definitely worth asking Dr for further testing and the ultrasound and CT scan might help. Good luck!

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Taking the time to explain your situation is so very kind. Scar tissue has never been considered. It is hurting on the side where I had the lobe removed. I think I will ask for testing, knowing that the pain is localized to the same region, but keep up hope that it is something else that is hurting me. I am happy to hear your pain is reduced!! I wish you continued healing

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I have had complete thyroid removal due to cancer. I do have follow up tests yearly. For some reason my Lev dosage does not work for me, therefore I sweat profusely with shaking and irritability. I have a cabinet full of Synthroid meds! I would go for further testing to be on safe side. Then if all ok I would tackle your meds. I hope you start feeling better soon I know all too well what it feels like when you are sick all the time.

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@mm5210

Thank you 🙏 the only test other than free T3/T4 that was performed was TSH which is <0.01. I don’t believe I’ve heard of a thyroglobulin test. These were performed 2 weeks ago when I ended up in emergency because it had been over a week since I could keep liquid of any kind down. Could that be what she refers to as “markers”? There are so many numbers, and my doctor keeps saying my numbers “look off because she’s keeping me suppressed”. It is all so confusing when trying to research and understand just what my numbers should be when I’m told I won’t look normal. I’ve tried endocrinologists, Gp’s, ENTs. Each one tells a different story. I look forward to hearing from anyone else that might be able to guide me in the right direction. I feel like (as I did when diagnosed) I have to advocate for myself and be pushy. I just want to at least understand what I’m being told.

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@mm5210, did you meet with your doctor today?

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