The THYROID Thread

[angwill]

Still waiting for a call back from doctors nurse about biopsy instead of uptake scan and waiting to see if they can call and get the other test results. I would rather get the biopsy and whatever else started now vs having to wait 6 months.

Christine, Thanks for the info and I am not really sweating it about the size of the mass till a biopsy is done first. I was more upset that she wouldn't just word it that they are concerned about cancer instead of saying it most likely is cancer. I think she is a new nurse. If it is a simple mass do they have to remove it?

[Christine]

Originally Posted by angwill

Still waiting for a call back from doctors nurse about biopsy instead of uptake scan and waiting to see if they can call and get the other test results. I would rather get the biopsy and whatever else started now vs having to wait 6 months.

Christine, Thanks for the info and I am not really sweating it about the size of the mass till a biopsy is done first. I was more upset that she wouldn't just word it that they are concerned about cancer instead of saying it most likely is cancer. I think she is a new nurse. If it is a simple mass do they have to remove it?

No, they don't have to remove it; however, there's a few things you need to be aware of.

First, these things tend to grow and if it grows it will eventually impact your trachea, eshopagus, and throat. You don't want to wait until this thing grows and wraps all around in your neck and it becomes a major surgery to remove it. It happens. My cousin's was 9 cm and extending down into his throat. It was benign but not a fun surgery.

Second, thyroid cancer is not like most other cancers (such as breast cancer) where the lump or mass will contain all cancer cells. You could have a mass of tissue that will generally be normal thyroid tissue mixed with abnormal cells (cancerous or not). The person doing your biopsy is going to be taking a few samples. They won't be able to sample the entire mass. With a thyroid biopsy it's fairly rare to get a result back that is "YOU DON'T HAVE CANCER." The only real way to get that is if you have a small lump and they get a very good set of samples.

Otherwise, you are going to get a reading of inconclusive or cancer.

It's going to be up to you as to whether you want to live with an "inconclusive" biopsy.

Again, the uptake scan will give you an idea of how the mass is operating. If it is warm or hot, it is less likely to be malignant. If you add that bit of information to an inconclusive biopsy then you have two data points to gamble with. If you have a cold/non-functioning nodule and an inconclusive biopsy you might not rest as easy.

[angwill]

Originally Posted by Christine

No, they don't have to remove it; however, there's a few things you need to be aware of.

First, these things tend to grow and if it grows it will eventually impact your trachea, eshopagus, and throat. You don't want to wait until this thing grows and wraps all around in your neck and it becomes a major surgery to remove it. It happens. My cousin's was 9 cm and extending down into his throat. It was benign but not a fun surgery.

Second, thyroid cancer is not like most other cancers (such as breast cancer) where the lump or mass will contain all cancer cells. You could have a mass of tissue that will generally be normal thyroid tissue mixed with abnormal cells (cancerous or not). The person doing your biopsy is going to be taking a few samples. They won't be able to sample the entire mass. With a thyroid biopsy it's fairly rare to get a result back that is "YOU DON'T HAVE CANCER." The only real way to get that is if you have a small lump and they get a very good set of samples.

Otherwise, you are going to get a reading of inconclusive or cancer.

It's going to be up to you as to whether you want to live with an "inconclusive" biopsy.

Again, the uptake scan will give you an idea of how the mass is operating. If it is warm or hot, it is less likely to be malignant. If you add that bit of information to an inconclusive biopsy then you have two data points to gamble with. If you have a cold/non-functioning nodule and an inconclusive biopsy you might not rest as easy.

It almost sounds like the best route for me would be removal and testing. I just hate to waste money on tests that can just be inconclusive when eventually the mass will have to be removed anyway. I assume removal will be the only way to tell for sure if there is any cancer in it?

I am still not sure if mine is fluid filled or solid. I wonder if it is fluid filled do they just drain it?

Just got phone call back from doctors nurse with no answer about the mass type or size just that I must follow her protocol one step at a time and uptake scan is next. I am about to say screw it and find a new doctor. She is playing games with my thyroid meds that I have to call and ask her to call in a 30 day supply each month unless I play by her orders too and it is BS. I told her nurse I am about to ask for a new doctor. I have a feeling this doctor is going to tell me to find a specialist and dismiss me anyway.

[Christine]

Originally Posted by angwill

It almost sounds like the best route for me would be removal and testing. I just hate to waste money on tests that can just be inconclusive when eventually the mass will have to be removed anyway. I assume removal will be the only way to tell for sure if there is any cancer in it?

I am still not sure if mine is fluid filled or solid. I wonder if it is fluid filled do they just drain it?

Just got phone call back from doctors nurse with no answer about the mass type or size just that I must follow her protocol one step at a time and uptake scan is next. I am about to say screw it and find a new doctor. She is playing games with my thyroid meds that I have to call and ask her to call in a 30 day supply each month unless I play by her orders too and it is BS. I told her nurse I am about to ask for a new doctor. I have a feeling this doctor is going to tell me to find a specialist and dismiss me anyway.

Every area runs a little differently. When I was going through my stuff, I just got referred out to a head/neck surgeon. He was the one that discussed whether or not to do a biopsy or just go for surgery (although my GP was the one who did the uptake scan, ultrasound, etc prior to even getting to the surgeon). You could just opt to go directly to a surgeon, depending on how your insurance works. The other thing you could do is just go through it all and take a wait and see approach to see if your large mass is getting larger. Maybe it won't.

But to answer your question, the only way to get a conclusive biopsy is to either get lucky during the biopsy and hit a cancerous spot or to have mass removed and have it undergo full pathology.

[angwill]

Originally Posted by Christine

Every area runs a little differently. When I was going through my stuff, I just got referred out to a head/neck surgeon. He was the one that discussed whether or not to do a biopsy or just go for surgery (although my GP was the one who did the uptake scan, ultrasound, etc prior to even getting to the surgeon). You could just opt to go directly to a surgeon, depending on how your insurance works. The other thing you could do is just go through it all and take a wait and see approach to see if your large mass is getting larger. Maybe it won't.

But to answer your question, the only way to get a conclusive biopsy is to either get lucky during the biopsy and hit a cancerous spot or to have mass removed and have it undergo full pathology.

Thanks. Problem is DH is self employed and I lost my job and have not been able to find a new one. I have no insurance and sadly when I looked into private insurance plans I was deemed uninsurable. I have a feeling I am not going to find a surgeon that will take a cash payer without cash up front. I really am not sure where or how to turn at this point. I have a funny feeling current doctor is looking for a reason to give me the boot and tell me find someone else to call in my thyroid meds too. It scares me that I may be medless.