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Possible Hurthle cell cancer - terrified

babypod
Posts: 2
Joined: Jun 2011

Hello everyone.

 

Right before Thanksgiving a nodule seemed to appear on my neck overnight.  I went to the doctor on Friday for something normal, she felt my thyroid and there was nothing.  The next day I felt something small.  Now, at last u/s, I had a 2.8x2.9 cm nodule on my right lobe.  Lymph nodes looked "good".  The did a core biopsy and the results came back with Hurthle cells.  The pathologist report stated that they felt the Hurthle cells were probably there becasue of Hashimotos thyritis, or a Hurthle cell adenoma - but favoring the hashimotos becasue of the the way they looked (and during this it was found that I have the thyroid killing antibody so they did diagnose me with Hashimotos even though my thyroid functions are WNL).  My ENT is going to remove the thyroid - but it being Christmas time we won't be able to have it removed until the end of January, beginning of Feburary.  She said these Hurthle cells are common in people with Hashimotos, and because the cells were mixed with lymph tissue and "lacked the atypia" seen in cancer that she is fine waiting.  

 

I am in a panic.  I have four kids ranging from 9 to 15 years old that I don't plan to leave.  I am 41 years old.  Would love any stories or advice.  The ENT was like, "15-20% chance of it being Hurthle Cell Cancer, 80-85% of it being benign.  I think we are good to wait to have it removed."  I want it out yesterday.  Things I am reading are so confusing.  Some things say because of my age, good chance of survival with Hurthle cell cancer, other things say "very aggressive cancer and prognosis is not known".  My PCP stated, "The pathologist thinks it is benign and you have a good ENT, you need to trust her," but this is my life and I am scared.

 

Would love to hear from others who are going through/have been through this.  

 

m123
Posts: 9
Joined: Jan 2016

Im in the same boat but mine says nothing about Hashimitos. Im having some additional trsting done for now. Why did you choose  surgery given what they are saying? where are you being treated? 

BellsAngel69
Posts: 104
Joined: Dec 2009

I'm a 12 year hurthle cell cancer survivor, have had four recurrences, two to my hip bone and two to my liver. While the recurrences haven't been fun (two bone and liver resections), I can say from experience that it's not as bad a diagnosis as you may first think. I know initial information you find online may scare you, but don't freak out. Find a good endocrinologist that is well versed in hurthle cell. You need your thyroid removed, they usually do RAI (radio-iodine treatment), although it doesn't usually work well with Hurthle cell because the cells are hard and don't absorb the radio iodine and may not be very effective. You should also have scans done at least once a year to make sure there isn't a recurrence. I was cancer free for four years, but after I left the last scan, got called back because I had uptake. After my first recurrence my treatment changed a bit. I see my endocrinologist every three months and he tracks my thyroglobulin/TSH and T3 an T4 very closly. If my TG (thyroglobulin) levels start to rise, he knows a recurrence is possible and does a PET scan. PET scan's are very effective and any spots of cancer will light up. It's a very effective treatment plan.

I had my last recurrence 4 years ago, so after having none the first four years, I had four over a course of the next four years, and now I've been cancer free (or maybe just a remission) for the past four years. Try to stay positive. That's the hardest part. Feel free to email me if you want more information @ bellsangel69@gmail.com or rorick@frontiernet.net. Hang in there!!

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