Guess What, Kids? It’s Cancer! And I’ve Got Some Questions for You.

By: Loolwa Khazzoom, Founder, Dancing with Pain

July 20th, 2011 • Patient AdvocacyPrint Print

So I got back my biopsy results from the honkin’ nodule on my left thyroid gland. The nodule takes up ¾ of my thyroid on that side. You might say it’s a land-grabbing space hog. The cells that came back are “suspicious.” They are called hurthle cells, which my endocrinologist says in her practice have come back 80% of the time as being cancerous.

Because the nodule is so big, I run the risk of it metastasizing to other parts of my body (Gd forbid!) if I do not get it out quick. Thyroid cancer, when surgically removed, seems to have a high success rate of never returning or spreading anywhere else in the body. But if left to its own devices, it can become brain and bone cancer. Which can lead to a painful death. That does not appeal to me.

The thing that really bugs me, is that apparently, despite being in 2011 and with all the gadgets and shit we have going on, there is no way to test the hurthle cells definitively without taking out the whole damn thyroid gland. Why is that? And what I want to know is whether there is a super advanced cancer center somewhere in the world that can determine whether these cells are cancerous or not, without taking out the whole damn gland.

Now here’s the other thing: I looked up hurthle cells on Wikipedia, and it says that they can either be cancerous or can be Hashimotos Thyroiditis – which apparently leads to hypothyroid type symptoms. My revered bodyworker/nutritionist has sworn for years that I must have some thyroid issue, because I have all kinds of symptoms that are in alignment with hypothyroidism. According to Wikipedia, I share the following symptoms with people who have hypothyroidism: I get super cold; I gain weight eating something as calorie-deprived as carrots; I am prone to high cholesterol (though it runs in my family too); and I had years of panic attacks in the middle of the night, sans panic.

The danger of removing the thyroid gland is that the surgery can cut the vocal nerve, which runs right near the gland. If one nerve is cut, you lose the ability to sing, the doctor says. If another nerve is cut (ie on the other side), you lose the ability to speak. You know, like, for the rest of your fucking life. Oh, did I mention that I’m a singer? Yeah. This bites.

So here’s my query to all of you patient-savvy smarty-smarty pants out there: What can I do to either definitively diagnose or completely eliminate this mo-fo nodule from my thyroid gland? Where do I need to go? What do I need to eat? What test do I need to take? Help!



Comments

donna kuhn July 20th, 2011

hi loolwa,
i’m really sorry this is the news that u got. i have hashimotos and it was diagnosed by a blood test. from the little research i did hurthle cell cancer is pretty rare. it sounded like people were diagnosed with it without getting their whole thyroids removed. get 2 other opinions if you can afford to do so.

M1ssDiagnosis July 21st, 2011

PLEASE immediately go to http://www.stopthethyroidmadness.com and join the STTM group on FB. You can ask the author questions directly in the group and even schedule a phone consultation with her. SHE CAN HELP YOU!!! I guarantee it. Please talk to her before you do anything else. She is the thyroid guru.

Loolwa Khazzoom July 21st, 2011

Actually taking iodine can be dangerous if your idoine level is not low. There is a urine test to determine if it is caused by iodine deficiency. I took it. Iodine is not the issue.

Sonja July 21st, 2011

*hugs*

Hayley Cafarella July 22nd, 2011

I am so sorry to hear about your confusing diagnosis. I don’t have any answers, just wanted to send some love and strength. xx

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