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Looking for insight/answers

FenwayS
Posts: 11
Joined: Jun 2005

Hi everyone. I am new here and newly diagnosed with papillary carcinoma. I meet with my surgeon next week to learn about the surgery/recovery, etc. But I have some questions I wanted to ask of people who have been through this. What I'd really like to know is this: Has anyone experienced leg pain that is a very deep, dull ache? Energy crashes and mood swings? Headaches? My hormone levels are in the normal range but my tumor is very large (they say it occupies the entire thyroid gland). I don't yet know if the cancer has metastasized but have the feeling it has. I would like to know if there are any symptoms or signs that would point to that and what tests one would go through to determine this. Thanks very much for reading and for your help. While I'm very positive, this can be daunting, as you know, and I have two beautiful young daughters to stay chipper, upbeat and healthy for! Thanks.

ronishomer
Posts: 5
Joined: Jun 2005

Hi, I'm almost as new as you are.. I had my surgery in mid May. The only thing I can tell you is your surgery goes the same way mine did you have had more problems with a head ache.. I was in the hospital overnight. That was a Saturday. on Monday I was back at work.

kelly-575
Posts: 24
Joined: Nov 2008

I read your article and was just wondering how your radiation went and if you had to be isolated? and how long it took to recover?

Thanks,

Kelly O'Brien
My email is kelly-575@hotmail.com

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

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.

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