My daughter with FAP had her colon removed in 2012.  In 2013 she developed hyperthyroid.  She was treated for 2.5 years and the hyperthyroid condition disappeared.  She was asymptomatic for a year and the symptoms returned.  She had moved to another city and sought treatment from an endocrinologist there who sent her for an ultrasound because FAP has increased incidence of thyroid cancer.  Her ultrasound shows 2 nodules, one heterogeneous solid at 1 cm and one hypoechoic at .5 cm.

The endocrinologist wants to follow up in 4 months.  Is it safe to wait?   I am having trouble finding recommendations specific to FAP other than a 160% chance of cancer for young FAP females over the general population.

Thanks for any input.


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I was told after a routine physical exam (with bone scan, ultrasound, etc) that I had a couple nodules on my thyroid.  The doctor who determined the results said they were harmless and are very common.  He said more than half of his patients have nodules on their thyroid glands.

I just had this experience last week. My thyroid blood tests came back normal but I had a large lump on my thyroid in my neck. They did an ultrasound and needle aspiration even though the doctor felt it was benign as it was very uncomfortable for me. They drained blood and he said it was a cyst. They did send out the biopsy and I am still waiting on the results, but he felt very confident it was a beniign nodule and yes many people have them and are unaware they have them.  He was not going to biospy, but since I was uncomfortable, he drained the cyst and decided to just send the biopsy as protocol.  

I have to be followed by an endocrinologist every three months as the doctor said there is a 30% chance these cysts fill back up. 

In my case, I wanted the biopsy, I was also experiencing ringing in my right ear which is the side of the neck the lump was on. If it will make your daughter feel better to have the biospy, I would request it.  Those odds would make me uncomfortable to watch and wait. Did they do a  full thyroid antibiody test on her also to check for hershimoto's disease which is commmom with UC patients, but not sure about FAP patients.  Good luck. 

Thyroid nodules are very common in the first place.  After my FAP diagnosis and surgery, I got with my endocrinologist and yes I had nodules. He has been following them for years. They have never changed on scan.  I can only speak from my experience.  I think the thyroid is something the docs keeps track of with FAP.  I guess if one wants to know what is in those nodules, the biopsy tells all?  anyone else had experience with this?   I don't really know what the latest news is on FAP and the prevalence of thyroid cancer.

I am a thyroid cancer survivor. I had a nodule felt on my throat by PCP in May 2015. He told me like 1 out of 10 patients he sends for the ultra sound end up with it being cancerous and not benign.

An ultrasound and needle aspiration biopsy confirmed I had papillary thyroid cancer. I had a thyroidectomy in July 2015 and they gave me the radioactive iodine 157 millicuries in September 2015. My scans since have all been negative and blood labs all look good. I am taking synthroid. Thyroids are not needed and synthroid does the job it used to do.

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