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Discussion Starter · #1 ·
It has been a year since I had surgery to remove my thyroid and 4 nodules and 8 lymph nodes that had papillary/ follicular cancer. Now things are growing very aggressive, my biopsy just came back as metastic thyroid carcinoma. I go in for surgery on the 22 nd. After that of course i googled it, I read somewhere that the survival rate went from 96% to 46%. I am scared to death,I feel like I have a nodule that is growing through my esophugus. Is there anyone else that has gone through this? If could you let me know how it has gone for you?
 

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Paizlee said:
It has been a year since I had surgery to remove my thyroid and 4 nodules and 8 lymph nodes that had papillary/ follicular cancer. Now things are growing very aggressive, my biopsy just came back as metastic thyroid carcinoma. I go in for surgery on the 22 nd. After that of course i googled it, I read somewhere that the survival rate went from 96% to 46%. I am scared to death,I feel like I have a nodule that is growing through my esophugus. Is there anyone else that has gone through this? If could you let me know how it has gone for you?
Oh, honey bunny!! We have had others here who have been seriously challenged so I hope they come along and offer support and hope to you.

Now on that survival rate; you know that is just a mean average of a certain cohort.

You did have RAI after your surgery, I think you said but that there was no further follow-up?

Have you had a whole body MRI?

Sending love, prayers and hugs to you; I care very much what happens to you and so do others on this board.
 

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Paizlee, I am truly sorry your cancer was not completely destroyed the first time around. I have not experienced what you are going through at this time. However, I am a year out from my surgeries, and I have a body scan scheduled for mid-April. There is absolutely no doubt in my mind that it is going to show a recurrence. I can feel it in my neck, on the left side. I can't see it like I could with the original tumor, but I can feel it...it hurts to talk much, it feels funny when I swallow, and as of the last few days, I can feel a sensation in my ear and under my tongue. For several months, I've written it all off as paranoia, but I can no longer write this stuff off. Did you have any wierd sensations over the past few months like I have?

Anyway, I was doing some research this morning because of all this, and I found a great website. I logged in here so I could share it with others. It explains a lot of information about thyroid cancer and recurrent thyroid cancer. I think you may find it helpful.

http://www.endocrinesurgerync.com/Endocrine_Surgery_NC/THYROID.html

The information presented in the pages accessed through this link have made it very apparent to me that it is critically important to have a team of doctors who absolutely know their stuff. I am having doubts about my oncologist...I feel like he has blown off my concerns over the past 8 months or longer.

Please, please, please keep us posted on what's going on with you and your cancer. While we aren't going to be there physically for you, we can certainly provide some mental support.

Octavia
 

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Discussion Starter · #4 ·
I had a follow up appointment 6 months ago, they saw nodules growing in my neck, did FNA on 8 of them and the results came back inconclusive. At that point my Endo told me to reschedule a biopsy appointment 6 months ago, which is where I am know.

I have definitely had those symptoms, the pressure in my neck is really low, I feel like it is right bellow my collar bone, and my fear is that they are going to not find it during surgery, and my right ear has constant pressure, and I have a lump unfpder my tounge that I can feel, I had my Endo feel it and she said it was due to the RAI. At this point I feel like I have been so neglected, and not heard. Now look what has happened... Octavia if you are having these same issues I say get in now....
 

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Discussion Starter · #5 ·
Oh my heck did you see the incision on the (surgery for Regional recurrence of Thyroid cancer... I am not expecting that....I assumed they would just go through my old incision.... My consultation appointment with the surgeon on the 14 th cannot come quick enough.
 

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Paizlee said:
Oh my heck did you see the incision on the (surgery for Regional recurrence of Thyroid cancer... I am not expecting that....I assumed they would just go through my old incision.... My consultation appointment with the surgeon on the 14 th cannot come quick enough.
I did see that incision...quite large, but if it means they can get it all, then I guess it's worth it.

I know you said your biopsy showed recurrence. Did you also get a body scan so they could see the extent of it and know where to remove tissue? Or is the surgery the same, regardless of a scan? (As in, they'll remove all of the lymph nodes with or without a scan???)

When you got RAI, do you recall how many millicuries you received? (Sometimes it's 100, sometimes it's more or less than that.)
 

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I am really sorry you have to go through more of this. I will keep you in my thoughts.
 

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Paizlee, I cannot comment from my own experience, but my sister in-law (in-law) had cancerous thyroid nodules and had entire thyroid removed. She had RAI. Then about a year or so later, she had 8 small nodules grow exactly where her thyroid HAD been. They too were cancerous so they removed and also took her parathyroids. That has been several years ago and now has been all clear. I wish I had more details to share, but felt some positive comments might be helpful. She's doing great!

You are in our thoughts; be strong, be positive!
 

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Octavia said:
Paizlee, I am truly sorry your cancer was not completely destroyed the first time around. I have not experienced what you are going through at this time. However, I am a year out from my surgeries, and I have a body scan scheduled for mid-April. There is absolutely no doubt in my mind that it is going to show a recurrence. I can feel it in my neck, on the left side. I can't see it like I could with the original tumor, but I can feel it...it hurts to talk much, it feels funny when I swallow, and as of the last few days, I can feel a sensation in my ear and under my tongue. For several months, I've written it all off as paranoia, but I can no longer write this stuff off. Did you have any wierd sensations over the past few months like I have?

Anyway, I was doing some research this morning because of all this, and I found a great website. I logged in here so I could share it with others. It explains a lot of information about thyroid cancer and recurrent thyroid cancer. I think you may find it helpful.

http://www.endocrinesurgerync.com/Endocrine_Surgery_NC/THYROID.html

The information presented in the pages accessed through this link have made it very apparent to me that it is critically important to have a team of doctors who absolutely know their stuff. I am having doubts about my oncologist...I feel like he has blown off my concerns over the past 8 months or longer.

Please, please, please keep us posted on what's going on with you and your cancer. While we aren't going to be there physically for you, we can certainly provide some mental support.

Octavia
Oh,my.........................{{{{{{Octavia}}}}}} Sending up some heavy duty prayers for you as well.
 

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Discussion Starter · #10 ·
The dose I had of RAI was 74.4. And I did get a body scan. they are saying that the type I have may not absorb iodine very well. Shellebean... Thank you for giving me some positive info.
 

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Shellebean, thanks for sharing the brief story about your sister-in-law. Andros, thanks for the prayers for everyone...I think they help!

Paizlee, that's interesting about the possibility of the cells not absorbing iodine very well. I've often wondered about that. Was it a recent scan that didn't show much, despite the positive biopsy?

Praying for a great surgery (as surgeries go) for you. :hugs:
 

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shellebean said:
Paizlee, I cannot comment from my own experience, but my sister in-law (in-law) had cancerous thyroid nodules and had entire thyroid removed. She had RAI. Then about a year or so later, she had 8 small nodules grow exactly where her thyroid HAD been. They too were cancerous so they removed and also took her parathyroids. That has been several years ago and now has been all clear. I wish I had more details to share, but felt some positive comments might be helpful. She's doing great!

You are in our thoughts; be strong, be positive!
Thank you for sharing this wonderful outcome; we need some "positive" around here right now.

You are a blessing!
 

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Paizlee, I'm so sorry you are dealing with this (you too, Octavia!!). I, too, know someone with who had nodules grow back after a TT. She just had surgery (they opted to go back in and "clean things up") and is now about to do RAI. She said her experience was similar to the her first TT/RAI. She's frustrated to being back to what seems like the beginning again, but is feeling well and expected to recovery just fine. Keeping you in my thoughts.
 

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joplin1975 said:
Paizlee, I'm so sorry you are dealing with this (you too, Octavia!!). I, too, know someone with who had nodules grow back after a TT. She just had surgery (they opted to go back in and "clean things up") and is now about to do RAI. She said her experience was similar to the her first TT/RAI. She's frustrated to being back to what seems like the beginning again, but is feeling well and expected to recovery just fine. Keeping you in my thoughts.
Another positive note; thank you so much for this, Joplin1975!
 

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joplin, thanks for sharing that positive story! :)
 

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Oh...sending prayers and positive vibes your way, Paizlee. Best wishes. And lots of hugs!

:hugs: :hugs: :hugs:
 

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Thinking of you, Paizlee.
 

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Hang in there, you are in my thoughts.
 
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