Hi Deliana
I am now a 42 year old woman, who had what was believed to be a multi-nodule goiter at the age of 36, which after 2-1/2 years of fine needle aspiration biopsies, . Hurthle cells were found. Before they found the hurthle cells, I had 4 to 5 fine needle biopsies (not ultrasound guided) that all read fine or insufficient cell count which was alright, a nuclear scan which also found a cold spot and then a ultrasound guided fine needle biopsy. The ultrasound guided fine needle biopsy finally found the hurthle cells, at which point I was received a call at work and then had surgery within two weeks to remove the tumor. The tumor at this time was 4 x 4 x 1.8 cm and my daughter was 2-1/2 years old.
The cells were in the left lobe of my thyroid, 3-1/2 years ago. The frozen section biopsy done at the time of surgery showed the tumor was benign and it was decided that the right lobe (which also had numerous clear solid nodules) was not removed or biopsied. If it would have been my choice, I would have had the entire thyroid removed, but the surgeon did not feel as I did - he did what he felt was right for me ( I believe this with all sincerity).
I have been tested ever since, on a yearly basis. The largest nodule on the right lobe (which was left at the time of surgery) was 1.5 cm x 1.5 cm, it is now 2.1 cm x 2 cm. After the last ultra sound, I had another fine need biopsy (first time since the last surgery). I have been told the biopsy is completely benign.
I am so grateful that it is benign, but kind of feel as though I am playing a dangerous game of risk and live with the constant fear that they will come back. The two doctors, I am seeing have differing opinions on how to approach hurthle cells and from what I have read they usually appear in tumors approximately 3.9 cm in size- not sure what anyone else reading this has found through research or doctor consultation, but it has now been 6 years for me since this started and I am not sure if I should agree to having surgery when there are no cells present or if the cells will suddenly appear, again as the nodules grow, which is seems to be doing slowly. All I know is that if the hurthle cells are there they need to be taken out - you don't want to keep worrying about them mutating into something else.
It would be helpful to hear from others who have had the same type of experience
****or has anyone been in touch with the mayo clinic on this sort of scenario? I have posted a question, but have had no response as of yet. Are there any doctors out there reading this who could share some insight to those of us who are in similar situations??