THYROID CANCER

[Loretta6]

Hi, my name is Loretta and I have papillary thyroid cancer. I am going to see a surgeon today about removal of my whole thyroid. If possible, I would like to talk to someone about what it is like to not have a thyroid and what it is like to be taking medication for the rest of your life. I am very scared of the fact that I am being told they are going to take something out that my body cannot live without. I know this type of cancer is nowhere as bad as other forms however I think just the thought of being told you have cancer can set you off emotionally. I am 45 and have never had a major operation or anything major wrong with me, this is very frightening for me. I think it would be a great help to be able to talk to someone who has been through this, if possible. Thanks...

[#2]

Hi Loretta, I had my thyroid removed over 13 years ago due to cancer. I was scared stiff at the time. My thyroid was removed within days of finding out I had Cancer. I was really lucky that I had wonderful doctors and nurses, I asked so many questions and then some more. I had radio treatment around 8 weeks after my total thyroidectomy. I started on Oroxine after my radio was completed. I take Oroxine daily and once my oroxine levels were adjusted (it does take time) my energy levels were back to 'normal' - although it is a 'new normal'. I still occassionally forget to take my oroxine, but it is rare, it becomes part of your routine and it is the last thing that I do before going to bed (I found that easier for me). I know others are told to have it with dinner or first thing in the morning, but my doctor is happy for me to have mine as I head off to bed. I know that it is scary, and you don't get too much time to take it in before the process starts. Please let me know if you have any questions that you think I may be able to help with. I am happy to help if I can. Good Luck for today....I hope it all goes better than expected! Katie 🙂

[benlisecca]

Hi Loretta, You're right, cancer just sucks regardless of where it festers. I had my thyroid out in December last year and then radioactive iodine in Feb this year and although it is a bit daunting and the emotional implications of cancer are horrible the actual operation isn't too bad at all. Yes...don't get me wrong, it's an operation and my neck and throat were stiff and sore but not unbearably so. I think I took a couple of panadol and that was enough BUT I did lots of neck exercises even though they did hurt lots. It took a couple of months to get the oroxine dose right but it too wasn't that tough.Yes...I felt really tired at times, a real bone weary can't move off the lounge type of tired but I did keep going. I take my oroxine as soon as I wake up with a cup of tea....like Katie says, it's finding the time that works for you. The first thing I do when I get up is a cuppa so the tablets sit next to the kettle to remind me. I then have to wait at least half an hour ( I think it's meant to be an hour but.....) to eat something. My endo said that as long as what I eat and drink with the tablets is a constant then it will all be ok. It's no drama really. So now I am 6 months out from the thyroidectomy and I feel pretty good. I play soccer 4 times a week, I run around after 3 young kids and I have lots of coffees with friend - energy levels are fine. The scar is not even noticeable (massaging works really well) and it really doesn't have any impact on my life. Maybe the only thing I notice is that if I stretch my neck it still is a tad tender Sooooo I don't stretch my neck :-) I hope this helps you a bit and feel free to drop me a line anytime. Yes, it is very scary and life changing but you will get thru it and I am sure that in 6 months you will be on a new phase of your new life. Sharon xxxxx

[Riss654]

I was diagonosed with thyroid Cancer in Sept 2011 after months of tests for other things, because my thyroid blood tests were all normal. But due to other symptoms such as trouble singing & nerve pain I was finally diagnosed after 2 biopsies & several types of xrays & a persistant G.P. My thyroid was removed in October but then I was told they weren't sure they removed the whole tumour which turned out to be larger than they thought. Because of one of the xrays I had done, I can't have Radioactive iodine till Jan 13th (a friday - not that I'm supersticious :o). I have been told there is a good chance that won't get it all & I will need radium treatments after that. That also may not be successful & I will need a further "difficult & dangerous" operation. I am hoping 2012 brings some good luck with it as I have so much other good stuff happening this year & don't want "difficult & dangerous" to factor in at all. Has anyone had any similar experiences? I would love to hear from you.

[neen]

Hi Riss654, My goodness, I must say even though i wish that neither of us ended up on this page, its been quite amazing for me reading your post. I was also diagnosed with thyroid cancer in september, after many other tests everywhere else trying to find out what was wrong with me! I also had my thyroid (and many Lymphnodes) removed in October, and am also awaiting radioactive iodine this month! (I will have mine exactly 2 weeks after you).... If you dont mind me asking, what is the other operation they are talking about? It's so hard when it's unsure whats happening in your body and what effects all of this treatment will have, and those moments of having to 'just be' as i say. How are you doing getting through the day? I wish you much luck, and will be thinking of you. Neen x

[Riss654]

The operation would be a neck dissection. I am not totally sure why it is difficult & dangerous, I think it's because where they think the rest of the tumour might be. I am hoping it doesn't come to that though & am counting on options 1 & 2 to do the job. I have good days & bad days I must say. It's just all this waiting that is difficult. But I am doing all I can do with diet & excersise to have my body in a good place to fight any cancer that may still be there. What else can you do hey. Luckily I have a very supportive family who don't let me get too down in the dumps. Did they tell you if they got all the cancer with your initial operation. If so they are probably doing the iodine treatment as a precaution. Apparently it is standard procedure after your thyroidectomy.

[Riss654]

The operation would be a neck dissection. I am not totally sure why it is difficult & dangerous, I think it's because where they think the rest of the tumour might be. I am hoping it doesn't come to that though & am counting on options 1 & 2 to do the job. I have good days & bad days I must say. It's just all this waiting that is difficult. But I am doing all I can do with diet & excersise to have my body in a good place to fight any cancer that may still be there. What else can you do hey. Luckily I have a very supportive family who don't let me get too down in the dumps. Did they tell you if they got all the cancer with your initial operation? If so they are probably doing the iodine treatment as a precaution. Apparently it is standard procedure after your thyroidectomy. It's good to talk to someone in the same boat. I wish you luck & hopefully 2012 will be good for both of us.

[neen]

Dear Riss654 Fingers crossed for you too! I had a bilateral kneck disection done at the same time as the thyroidectomy as the cancer has spread to lymph nodes. Which we thought was only on one side to start with and then found we needed to remove on both sides, upper and lower. I think if its similar, what makes it difficult is the high density of nerves and blood vessels in the area. My surgeon feels my operation went well as they removed extra swollen lymph nodes as precaution and we should be positive, but also said there is no for sure answer at this point. So i wait for the treatment and scan to see if it tells us more! think you are right about the radioactive iodine treatment being standard procedure. Can i ask where you are having the treatment done? Neen x

[Riss654]

I'm having my treatment done at the Royal Brisbane. My initial op was done in Bundaberg, but they didn't realize till the thyroid was removed that lymph nodes were involved & that more surgery may be necessary. I was then referred to the top guy at the Wesley who doesn't want to operate for at least 6 months to allow the first op to heal properly as I had a couple of infections. He referred me to the cancer centre at the RBH where the iodine & radium treatments if necessary are done. I can't complain about any of the medical team, just wished I would have been referred to the guy at the Wesley in the first place who would have likely done the same op as you had.