Ok, if you made it this far you are truly interested in this. My reason for putting this together is my son had this tumor. He was 6 yrs old when it was discovered in Feb. 2001. At the time of discovery it was quite visible to the naked eye, he had a prominent "lump". He had a right hemithyroidectomy. The tumour was 2.2 x 2.0 x1.4 cm when it was removed. He has had surgery only with follow up neck ultrasound and chest xray. At present, ultrasound has revealed a 4mm growth on his left isthmus. This will continue to be monitored, of course.
I have enquired on various sites, throughout the web, asking if anyone knows of this cancer. No one has responded. One gentleman did respond that his wife has ectopic thymus tissue carcinoma and I wish her all the best with her treatment. She has a very difficult journey ahead of her. I have contacted various doctors with many questions and everyone has responded very kindly and quickly. I thank them very much for their generosity.
Settle is a low grade, indolent tumor (causing little or no pain or annoyance). High grade cancers behave more aggressively. The tumor presents in the thyroid but more closely resembles a thymoma in its behavior. It is believed to originate in remnant branchial pouch tissue. Does tissue one one side also mean tissue on the other side? Does tissue on the other side mean another tumor? Thyroid cancer is generally treated with radioactive iodine. This is treated with radiation and/or chemotherapy.
This tumor is probably more prevalent than is documented. Several abstracts have shown how the tumor was classified as a standard thyroid cancer but was later revised. Other differential diagnosis include thyroid spindle cell tumor with mucous cyst, malignant teratoma, thyroid thymoma in childhood, and unusual thyroid tumor in a child. One abstract shows that the enlarged thyroid was treated as a thyroiditis for over a year before FNA was completed
I have discovered that one has to be a bit of a detective and think outside the box in this quest. On the suggestion of some more experienced folks, I contacted some of the doctors who wrote the various articles on SETTLE. I asked them to give my name and address to the patient or any doctor who might have been involved in their case. I heard from everyone to whom I wrote (further increasing my gratitude to the medical profession).
I heard from S. who is five years cancer free. His tumor was about 3 inches long, he had his entire thyroid removed. He had no chemo. or radiation. He is enjoying life to the fullest and credits his family, friends and his strong faith in God in helping him through it all. Dr. K. was the middleperson on that contact. I heard from Dr. I, who kindly sent me a copy of his report. His patient is 12 yrs. cancer free. I heard from Dr. J. in Slovenia, who is going to give my name and address to her young patient's family when they next meet. Note: As of 2/20/06 Cathy has found two others with SETTLE through our forums, and one other with Childhood thyroid cancer. This is a very rare disease.
For a while we felt like the only ones out there but now we know we are not alone. It is gratifying to hear that everyone is doing well.