Looking for insight/answers

Hi. I'm sorry you needed to join us here, but hopefully can provide some info to help. If you look at the box on the left here at CSN, and look under "Personal Web pages", my page has lots of links about thyroid cancer that maybe can help you a bit. (under 'Rustifox').

The leg pains and cramping are a very normal symptom/sign of hypothyroidism, and can sometimes occur even in a subclinical (seemingly 'normal') hormone situation. They will usually resolve when we are back on full replacement hormones after our surgery, but can be very painful, and even show symptoms of restless leg syndrome.

These links have some info on how/why this happens:
http://www.emedicine.com/pmr/topic57.htm
http://www.postgradmed.com/issues/2002/04_02/lockshin2.htm

The energy crashes, and mood swings are very normal, too, and can also occur with even slight variations of our hormone levels.

Hopefully your surgeon was able to offer some options for removal of the mass. Technically, the only way(s) of determining any areas of possible mets is through imagining - our first (and best) option is radioactive iodine scanning. If the tumor cells uptake radioactive iodine, this is a very good thing, and can provide alot of info. If the cells have 'dedifferentiated', or are 'poorly differentiated', then PET scans (these use a glucose based contrast) will show any areas of mets when the I-131 is not showing them.

Surgery is always our first choice, followed by radioactive iodine, if the cells are still 'thyroid like'. Radioactive iodine is also most effective on smaller tumors (ie 1cm or so).

But there are other options, too, even if surgery isn't possible, such as alcohol ablation, external beam radiation, etc.

This is daunting, absolutely, but even with large tumors there is a very good chance, with papillary, that we can have the cells totally erradicated, with treatments over a period of time.

Please know that even a poorly differentiated thyroid cancer is survivable. My Mom had poorly differentiated papillary, also with a very large tumor with spread to her strap muscles, diagnosed in 1971.

She passed in 2002, from a heart related issue, but her thyroid cancer was not a problem, and once treated never reoccured. It was resolved by treatments and surgeries in the first few years.

Plan on watching your beautiful young daughters grow up, too, ok? If I can help, please feel free to email. It does help for us to discuss these things with others who know what we are going through! Big hugs sent your way.