1. < Thyroid Cancer

Occult Papillary Thyroid Cancer with Lateral II Lymph Node Metastasis

Posted by runner1985 @runner1985, May 11, 2023

In December of 2021, I felt a lump in my right neck.

In April of 2022, I was diagnosed as being suspicious for PTC. The biopsy was taken from a swollen lymph node in the lateral II section of my neck. However, when I had my thyroid ultrasound a week later, it showed a completely normal looking thyroid.

Fast forward a few months, and in July of 2022, I had a lymph node dissection of the right side of my neck WITHOUT a thyroidectomy. This was my choice, not my doctor's.

I have since had an ultrasound of my thyroid in October of 2022 which continued to show a normal thyroid. I followed this up by getting an MRI of my head and neck in April 2023 which revealed no lymphadenopathy. I am planning to get another ultrasound of my thyroid and neck region in October of 2023.

I am wondering if there is anyone like me, or who can help me understand the long term consequences of my choices.

Shared files

22 (22.03.31-Swollen-Lymph-Node-Biopsy-blacked-out.pdf)

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koh | @koh | May 13, 2023

I am not sure I understand why you keep having studies done. Is the lump growing? Is it still there? Lymph nodes change based on infections however that’s what they are designed to do; did blood work show signs of lymphoma? If nothing is showing up in the scans, I don’t understand why you keep having them.
“Suspicion of PTC”” is usually due to something that shows up in the various scans and/or biopsy; maybe you should go for a second opinion.
Good luck!

REPLY
1 reply
runner1985 | @runner1985 | May 13, 2023
In reply to @koh "I am not sure I understand why you keep having studies done. Is the lump growing?..." + (show)
@koh

I am not sure I understand why you keep having studies done. Is the lump growing? Is it still there? Lymph nodes change based on infections however that’s what they are designed to do; did blood work show signs of lymphoma? If nothing is showing up in the scans, I don’t understand why you keep having them.
“Suspicion of PTC”” is usually due to something that shows up in the various scans and/or biopsy; maybe you should go for a second opinion.
Good luck!

Jump to this post

Thanks for the questions! I will try to answer them as well as I can without being an expert.

1. Once you are "suspicious for PTC," the doctors seem to all recommend a thyroidectomy. I suspect the reason is that having your thyroid out and being on synthetic thyroid hormones is better for you in the long run than having the cancer spread to other parts of your body.

2. The lump is no longer there. The lump was surgically removed in July of 2022, along with some 26 other lymph nodes. (I have a 4 or 5 inch scar on the side of my neck to prove it!) The chemical analysis of 4 lymph nodes revealed markers consistent with being suspicious for PTC.

3. Before having the lymph nodes removed, I had another biopsy done in June of 2022. I also had my slides sent to another institution to have them analyzed. While different tests were done, the results seemed consistent for being suspicious for PTC. (I uploaded a document in my first post for anyone to see)

4. Now, the reason for all the studies has to do with what all the doctors (2 different ones) told me. Even though they can't see any cancer on my thyroid, it is most likely there, and they will find it after they take my thyroid out. Doctors have told me that my cancer will spread and metathesize into another part of my body, if I don't have it taken out. I have even been told by my doctors that I will kill myself if I don't have my thyroid taken out. The reason I keep having tests done is in response to these doctors, namely, to make sure I am not doing something that will kill me by keeping my thyroid in my body. It is my version of "active surveillance."

This is why I am looking around for answers. I don't want to be reckless with my health, and maybe even find someone who can help me understand my situation better.

REPLY
1 reply
koh | @koh | May 13, 2023
In reply to @runner1985 "Thanks for the questions! I will try to answer them as well as I can without..." + (show)
@runner1985

Thanks for the questions! I will try to answer them as well as I can without being an expert.

1. Once you are "suspicious for PTC," the doctors seem to all recommend a thyroidectomy. I suspect the reason is that having your thyroid out and being on synthetic thyroid hormones is better for you in the long run than having the cancer spread to other parts of your body.

2. The lump is no longer there. The lump was surgically removed in July of 2022, along with some 26 other lymph nodes. (I have a 4 or 5 inch scar on the side of my neck to prove it!) The chemical analysis of 4 lymph nodes revealed markers consistent with being suspicious for PTC.

3. Before having the lymph nodes removed, I had another biopsy done in June of 2022. I also had my slides sent to another institution to have them analyzed. While different tests were done, the results seemed consistent for being suspicious for PTC. (I uploaded a document in my first post for anyone to see)

4. Now, the reason for all the studies has to do with what all the doctors (2 different ones) told me. Even though they can't see any cancer on my thyroid, it is most likely there, and they will find it after they take my thyroid out. Doctors have told me that my cancer will spread and metathesize into another part of my body, if I don't have it taken out. I have even been told by my doctors that I will kill myself if I don't have my thyroid taken out. The reason I keep having tests done is in response to these doctors, namely, to make sure I am not doing something that will kill me by keeping my thyroid in my body. It is my version of "active surveillance."

This is why I am looking around for answers. I don't want to be reckless with my health, and maybe even find someone who can help me understand my situation better.

Jump to this post

It sounds like you have been through a lot! I am not sure I understand the situation based on what my understanding is of how thyroid cancer grows.
I was told that the only way to definitely diagnose thyroid cancer was by surgery but since it is a slow growing cancer you can wait to see if something grows….if it doesn’t, then it would be less likely that it is cancer.
I just don’t think a doctor can state that something that has not shown up on any scans so far, will metastasize into another part of your body….this does not make sense to me (however it might be something I never heard of before.) Blood tests, ultra sounds and Ct scans seem to be good ways to monitor, but unless they have something specific, I don’t understand why anyone would consider surgery to remove their thyroid.
A lot of doctors seem to recommend second opinions from people in their practice or friends they work with so it might not be neutral. Surgery will give the doctor the ability to know if you have thyroid cancer, however from what I understand it is usually a self contained cancer that doesn’t spread outside the thyroid. If your tests have shown a “normal thyroid,” I don’t understand why you would need to have surgery.

REPLY
1 reply
runner1985 | @runner1985 | May 13, 2023
In reply to @koh "It sounds like you have been through a lot! I am not sure I understand the..." + (show)
@koh

It sounds like you have been through a lot! I am not sure I understand the situation based on what my understanding is of how thyroid cancer grows.
I was told that the only way to definitely diagnose thyroid cancer was by surgery but since it is a slow growing cancer you can wait to see if something grows….if it doesn’t, then it would be less likely that it is cancer.
I just don’t think a doctor can state that something that has not shown up on any scans so far, will metastasize into another part of your body….this does not make sense to me (however it might be something I never heard of before.) Blood tests, ultra sounds and Ct scans seem to be good ways to monitor, but unless they have something specific, I don’t understand why anyone would consider surgery to remove their thyroid.
A lot of doctors seem to recommend second opinions from people in their practice or friends they work with so it might not be neutral. Surgery will give the doctor the ability to know if you have thyroid cancer, however from what I understand it is usually a self contained cancer that doesn’t spread outside the thyroid. If your tests have shown a “normal thyroid,” I don’t understand why you would need to have surgery.

Jump to this post

Thanks for taking the time to comment. 2022 was quite the year! I really appreciate having someone to talk to about this. While I met a lot of nice ENTs and nurses, the doctors haven't really enjoyed working with me. I think they just wanted me to agree with them. However, God made me someone who questions everything. I'm not one to take "a leap of faith" just because I am told to by a doctor. In the meantime, I have tried looking for research, studies, etc... on my particular situation, and really haven't found anything helpful.

That is one of the reasons I commented here. I am trying to reach out and see if my situation is one that others have been through and can offer me advice on how to proceed. I am a daddy with a wife and 5 beautiful children. I don't want to unnecessarily risk my life over my thyroid. However, I like my thyroid and don't want to give it up unless I see more evidence for such a move.

I'm not sure what your expertise is, but thanks for the encouragement!

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