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22 with thyroid cancer

petersons614's picture
petersons614
Posts: 20
Joined: Sep 2010

I am knew to this and was recently diagnosed with Thyroid Cancer in late August. I am scared and don't know what to expect...just looking for some support or someone to talk to...Thank you for your time.

Marvusman's picture
Marvusman
Posts: 22
Joined: Sep 2010

Petersons I too am scared we all are. You are not alone. I was diagnosed in 2009 when I was 27 and had major surgery and then it came back in 2010 just year later and yet another surgery. I know what you are going through it is very frightening. Where do you live and where are you going for treatment? It's important tobe treated at a top cancer hospital. My name is Marcus by the way.

petersons614's picture
petersons614
Posts: 20
Joined: Sep 2010

Thank you! I am from SD. I had my surgery at Sanford Hospital. I am getting treated at Sanford Hospital. I am getting the radioactive iodine and I'm a little nervous because I don't know what to expect. My name is Riki.

kitandkat's picture
kitandkat
Posts: 11
Joined: Sep 2010

I had thyroid cancer in high school... I'm 20 now.

Yes, RAI...

Honestly, I didn't really have any symptoms the first time. Looking back I was kind-of depressed and fatigued but not enough to notice it. I had had surgery, and they hadn't started me on my thyroid meds yet. So maybe I still had thyroid hormones still circulating around my body - who knows. Anyway, typically they will take you off thyroid meds to lower your levels, so that the thyroid will take up as much iodine as it can. The low levels will also increase the hormone (TSH) that makes your thyroid produce thyroid hormone. This will show where it's active (taking up the iodine) and then if you're getting the RAI treatment (not just the scan) the iodine will kill the thyroid where it's being taken up. So you are hypothyroid (low thyroid) which means you can get really tired, depressed, gain a bit of weight (but this really only happens if you are hypo for an extended period of time so I maybe gained one or two pounds but not enough to notice), have a low appetite, and feel really cold. You also have to go on a low-iodine diet. It sucks at first, but after doing it a few times, you will get the hang of it. There is a good recipe book on thyca.org. Basically you can eat anything with kosher salt (as long as it's not dairy/doesn't have soy) because kosher salt isn't iodized. Once I figured this out, it was a LOT easier to find stuff I could eat. I bought tortilla chips from Chipolte because they use kosher salt, lol. My family was really nice and went on the diet with me, at least for regular meals.

After you've done this a few times I think you can just take a shot (Thyrogen) to raise your TSH and that way you avoid being hypo. But I've never done this because I'm not doing the tests anymore.

I'm kind-of weird and fall asleep during medical tests... but you can listen to headphones during the scan which is nice, so I brought my iPod. It can be kind-of claustrophobic. There's this metal plate that scans your entire body and during the head part it gets really close to your nose... I just closed my eyes for that part because I'd start freaking out a little!! Oh and the RAI itself is kind-of cool... well I think so. Most of the times I had the test, they had this whole procedure for bringing it in... a tiny medal canister inside an icebox inside a metal box, then they dumped it out onto a radioactive marked area of a table. LOL, it just seemed like a spy movie. With the dry ice in the icebox, it produced a nice effect ;) This didn't happen the last time I had the test which was kind-of upsetting... It's just a pill but it's pretty big. If you've taken a calcium pill before, I think it's about the size of those. Depending on the dose you might have to avoid coming into contact with people for a few days. It was worse for me during the treatment (compared to just a test) because the dose was higher. But every time I had to eat off paper plates and wash my own sheets. I didn't share a room so it wasn't a huge problem.

I hope that helps... personally I like knowing what's going on before it happens so I hope it's not too much information :) If you have more questions or just want to talk feel free to respond to my post!

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