# Biopsy was wrong. Doctors were wrong.



## gymbomom (Oct 11, 2013)

I've shared before my journey - is have 3 nodules.
Right side was benign - doctor says slam
Dunk benign.
Left side is atypical and 40% chance Afirma testing.

Recommends left side removed. I decide to remove both sides. They encourage me to be conservative. But, understand and will do what I want. Both doctors recommended only left side removal.

Doctor called this morning. Left side is benign. Right side -
One of the nodules was positive and had grown outside the thyroid as well onto the parathyroid gland. I'll get RAI in a few weeks.

Doctor said, well it was a really good thing you decided to take all
of it.

If I has done what they wanted I would be thinking that I'm in the clear. Never knowing I had cancer growing outside my thyroid on the other side.

I find this crazy. I know we are supposed to trust these tests and doctors. And all of
It was wrong for me.

Thanks for the people on here confirming to move forward with my gut.


----------



## Lovlkn (Dec 20, 2009)

gymbomom,

I don't trust doctors and in your recovery and replacement dosing YOU need to speak up and question when your doctor does something you do not agree with. It's your only hope of ever feeling "normal" and being dosed properly. I speak from my experiences of being mismanaged by doctors for many years, prior to my taking control of my health.

Good for you going with your gut and having the whole gland removed.


----------



## KeepOnGoing (Jan 2, 2013)

I had 3 FNAs and they all came back benign (though one was downgraded from suspicious on review).

All of them were wrong and there was in fact a 2cm tumour (how can you miss that??? It was clearly visible, after all.)

And then they wondered why I insisted they take the other half away!

I don't think they explain the limitations of the tests adequately. I had various "reasons" for missing the cancer given to me, but none of them were really convincing. I think the biopsy is just not 100% reliable, which has to mean that once in a while they miss something.

Well done for going with your instincts - now at least you know where you are and can move on.


----------



## joplin1975 (Jul 21, 2011)

I'm so glad you had a total. Good for your for sticking to your guns.


----------



## Endocrine_Surgeon (Oct 31, 2013)

The tests aren't perfect. Doctors aren't perfect. Every day we make a lot of decisions that affect patients' lives - and some of those don't end up the way we had hoped.

I'm glad that your doctors listened to you and performed the total thyroidectomy. In the end, you (and the surgeon) did what was right.


----------



## Endocrine_Surgeon (Oct 31, 2013)

I should also mention that your doctors had reasons for recommending a lobectomy. There are tradeoffs to everything. If you take out the whole thyroid, you are putting both recurrent laryngeal nerves at risk (injury to both nerves, while exceedingly rare, means that you end up with a tracheostomy) and you are putting all parathyroids at risk. Permanent hypOparathyroidism means you will have to religiously take calcium and will likely have symptoms occasionally, for the rest of your life. Doing a lobectomy only puts one recurrent laryngeal nerve at risk and only two parathyroids (you have 4 normally). Every time we decide to do an operation, we have to weigh the risks and benefits. We aren't always right, but we try to make educated guesses about each patient's individual risks and benefits of an operation.


----------



## gymbomom (Oct 11, 2013)

Endocrine_Surgeon said:


> I should also mention that your doctors had reasons for recommending a lobectomy. There are tradeoffs to everything. If you take out the whole thyroid, you are putting both recurrent laryngeal nerves at risk (injury to both nerves, while exceedingly rare, means that you end up with a tracheostomy) and you are putting all parathyroids at risk. Permanent hypOparathyroidism means you will have to religiously take calcium and will likely have symptoms occasionally, for the rest of your life. Doing a lobectomy only puts one recurrent laryngeal nerve at risk and only two parathyroids (you have 4 normally). Every time we decide to do an operation, we have to weigh the risks and benefits. We aren't always right, but we try to make educated guesses about each patient's individual risks and benefits of an operation.


I agree. I'm not angry. I'm more amazed that I spent that much time and money and it ended up not being even close to correct.

I know that you have to make your best educated decision with the facts you have. The doctor mentioned all of those risks that you did. I really liked him, both of them and still do. I'm glad I have the outcome I did. It just made me pause last night to think what if.....


----------



## SuzieSocialWorker (Jul 9, 2013)

Good for you! I also trusted my gut and didn't return to and Endo who would not biopsy the nodule that ended up having more cancer. Our instincts are there for a reason!


----------



## Andros (Aug 26, 2009)

gymbomom said:


> I've shared before my journey - is have 3 nodules.
> Right side was benign - doctor says slam
> Dunk benign.
> Left side is atypical and 40% chance Afirma testing.
> ...


Thank goodness! Hey; we are glad you joined our board and very very glad that we had some helpful suggestions for you! I am sorry about the positive pathology but in a way I am glad. I am sure you understand the mixed feelings!!!


----------

