10 years of thyroid cancer

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Hello, I'm new here! I don't really know what to expect, or what I actually want from being on here.. I was diagnosed with stage 3 papillary thyroid cancer in 2012 (I was 22 at the time) I had a total thyroidectomy and 3 rounds of radioactive iodine treatment. I've since had a partial neck dissection and it's looking like I'll need another one this year too. I've never met anyone who has thyroid cancer, I've spoke to my family about it but they can't really understand what it's like. I've never reached out before because I just put it to the back of my mind and I have 6 monthly checks so it's not in my life constantly (it's always on my mind though) but now I have 2 children and may need more surgery, I'm more worried about it all. I spoke to the consultant last year and asked if it will ever go and the answer was basically no, they'll just keep my levels as low as they can and then when they creep up that's when they can be dealt with. I feel like a very slow ticking time bomb, just waiting for it to spread to somewhere bad and then that's it. 

  • Hi

    Welcome to the group. You’ve certainly come to the right place! I just wanted to say hello - I’ve not lived with the diagnosis as long as you have (18 months) and I’m not as young as you but I know how terrible it all feels. I suppose that it’s good to be monitored closely but it’s horrible to constantly worry. I know there are people on the forum who were diagnosed a long time ago and hopefully they can offer some advice on how they live with it. 

  • Hi, thank you for the welcome. I don't really know what to expect or do in this group, other than to vent my feelings? I'm so unsure on these things. I'm sorry to hear you've not long been diagnosed. How are you getting on? I've got a neck ultrasound tomorrow to see what's changed and go from there as to whether I need more surgery or not. Thankfully my partner is going with me this time so at least I've got company. 

  • The group is great for advice and venting too! Lots of people with loads of experience but more importantly emotional support. I had an ultrasound a couple of weeks ago to see how successful the treatment just waiting for the results. How am I? Up and down really, I think I’m ok then I’m not. Yes good plan to take someone, my husband comes to all my appointments with me after my surprise cancer diagnosis when I was on my own. Hope all goes well tomorrow 

  • I think this will help me support wise, I've been to a cancer support group before but it wasn't what I expected, nobody really spoke about cancer and no one had the same as me. Hopefully you hear about the results soon, how many treatments have you had? I have good days and down days too, I think it's expected really. That's good your husband is there to support you, i find if I go to an appointment on my own I don't take as much in and I forget what they've said. 

  • I’ve had a hemi then total followed by RAI. I’ve also got papillary cancer but tall cell variant which is apparently more aggressive. It took a couple of years to get a diagnosis as I was told that it definitely wasn’t cancer but since then treatment appears to be fairly straightforward. I hope all goes well today 

  • Oh I'm sorry to hear it took years to get the diagnosis, must of been quite a shock. I don't really know about the different variants, I know that mine is slow growing though. Thank you, fingers crossed it's good news today. 

  • Hi again, I’m so sorry I typed a message out and managed to delete it except for hi (lol!) what I wanted to say was how much your message resonated. I was diagnosed with follicular thyroid cancer in august 2018 when I was 29. It’s been a hell of a journey since then, 5 ops, 3 RAIs, EBRT and touch wood since then just active surveillance with 6monthly bloods and CTs. I asked the same question to consultant and he gave me a similar answer. It’s a very difficult thing to process and it’s difficult to accept that this will just be a worry you carry forever. But here we are - if you ever want send me a message to vent my inbox is open I felt so alone when I was diagnosed - it’s hard to find people in the same boat so this forum really did help me anyway, I hope that your next appointment goes well. Take care xxx