Thyroid cancer

Hi everyone,

In October 21 I found a lump on the side of my neck, deep down I wanted it to be my thyroid as I had been previously diagnosed with fybromialgia and thought 'aha, This isn't fybro, it's actually my thyroid playing up!' (I hate fybro with a passion!) Well I went to the drs and had bloods done... which came back clear. And my thyroid is apparently fine. I was so upset that it wasn't my thyroid. However the dr wanted me to have a scan as he was concerned about the lump size. 
 

one FNA, one core biopsy later... Ive just been diagnosed with pappilary thyroid cancer which has spread across my lymph nodes in my neck. (I've been told I have cancer and Im still whinging about fybro )
 

ive got a total thyroidectomy and bi lateral neck dissection booked for the 19th jan.

ive not spoken to my Macmillan nurse yet as no one has contacted me, no idea what type or stage or size, i got sent home after the news on Tuesday and told to self isolate.
 

im scared. Not necessarily about cancer, I mean yes I'm worried about the fact it's spread to my lymph nodes and the what ifs of it being somewhere else, but I'm scared about life without my thyroid, already dealing with fybro I'm just worried I'll be all over the place once it's been taken out, anyone out there have any insight as to how they felt after ? I've a history of depression and anxiety as well as fybromyalgia.

ive looked around online and it seems everyone's behaves differently. Consultant said I'll be on thyroid medication for life and it won't make an impact. Is this true? 

Sorry for the long one!

  • Hi. I had thyroid cancer two years ago, like my operation was literally two years ago yesterday and had some of the same worries you do, especially about the thyroid medication and can tell you, on that score, it has had no effect on my life whatsoever. I might have lost a bit of weight since going on it, but we are talking a stone or less in two years and it was weight I needed to lose anyway!

    What your doctor said is definitely true for me. Everybody is different and there are some people who have difficulties with the medication, but they are a minority. Take care about googling since those who have had difficulties are the ones most likely to be looking for support online. Just a bit of warning in case you are thinking of doing that because you will hear stories of difficulties but for me...I wouldn't even know I didn't have a thyroid.

    If you are under 50ish, there are only two stages to papillary thyroid cancer as a general rule: unless it has spread outside the neck, it's stage 1. The small number of cases where it has spread outside the neck are stage 2, but those are quite rare.

    It is very common for papillary thyroid cancer to spread to the lymph nodes and while that may have an impact on risk of recurrence (so you may get radioiodine treatment to reduce the chances of this), it doesn't really affect your prognosis. And yeah, I was worried about spread outside the neck too, but thankfully, that is comparatively uncommon. And papillary thyroid cancer is slow developing, so not likely to happen too quickly.

    Feel free to contact me if you want to know any more or if you want to talk to me about anything.

    Hope your operation goes well - I'm sure it will.

    If it's any consolation, I really don't think my experience of thyroid cancer was any worse than say, having an appendix out or something. I haven't had any other operations so hard to compare, but the anaesthetic was probably the worst part!

  • Thankyou so much for seeing this and replying. 
    It has helped me no end!!

    I'm trying to keep off the internet and stay away from stories as most like you say are on the worse scale of things. However having no info to go on I found myself reaching out to charity websites etc thinking they would be safe places and my gosh some of the stories had me in a state of panic. It's hard to read peoples sad sad stories and it's heartbreaking, I only hope that this as you say, nothing more than a removal of a appendix!!! 
    time will tell I guess.
    I'm 31 in March, have a little 5 year old boy and have reasonably good health other than mental health in my 20s and fybro. So hoping I will recover well.

    if I lose some weight that's probably a good thing as I'm a little more over weight than I should be 5'8" and 14/15 stone(havnt checked in a while mind!!). The surgeon I saw on Tuesday said it had spread to both sides of my thyroid and into my nodes around the collarbone, hence the full removal. He did say I would need the radio iodine but I haven't had any further scans or tests for anywhere else other than neck yet. that will come after the surgery I think? He was very positive that I will have a full recovery and I guess I just need to stop over thinking it and trust the experts.
     

    I'm trying to stay positive and dig into all the therapy I did have once about staying present and not letting my mind wander. Doesn't help that I've been told to isolate for 2 weeks, so I'm digging out some crafts to do to keep me busy! 
     

    Thankyou for your reply, honestly, It really has eased me. 
     

  • You will have a full body scan after the radioiodine treatment. I am in Ireland and our health service is very different from yours, so the exact order of some things may be a bit different.

    And yeah, the thing with charity websites is that it's mostly people who have had difficulties who need support from charities. When I was preparing for my radioiodine treatment, the nurse mentioned support groups and I was thinking "why on earth would I want those?" The operation was over, I was pretty sure at that point that all was fine with the medication, I was back at work. There was nothing to discuss with a support group. Yeah, I was still a little concerned about reccurance/spread, but for the most part, the whole thing was really done. So most of the people going to charity websites, support groups, etc, are going to be those who have problems they need support with. I know it's very difficult not to look for additional information though. 

    If it's any reassurance, I was back at work a month after my operation and would probably have gone back sooner except I'm a teacher and really need to be able to talk loudly and turn my head quickly.

  • It was actually the consultant that suggest I used some of the sites, which in hindsight I wish I never had! But I can imagine they are a breath of fresh air for those in need, I mean, I'm currently using this site and it's help me so I guess it's not all doom and gloom. 
    I'm in wales so although it will be similar to england it's going to be slightly different. I'm sure most cases are different though. 
     

    im just eager to get it done now and then I can move forward.

    can I ask how long you stayed in for the iodine treatment? My Nan had a melanoma on her cheek and went home straight away after her treatment but the consultant suggested I would be in for 3-4 days? 
     

    I'm really pleased you seem to have made a great recovery and wish you all the best x

  • Yeah, I do see a benefit to reading up on stuff. Even some of the bad stuff, I'm glad I read about because one of the things I read about, the consultant then warned me about minutes before the operation. I'd have gotten some fright if that were the first I heard of it!

    For the radioiodine treatment, I stayed in for 2 days, I think. Went in on Tuesday and I think it was Thursday I went home on. It's different from other treatments, like treatment for melanoma, because you are radioactive. You aren't sick or in need of any kind of further treatment. It is just to keep you isolated from others in order to protect them. That was a fun discussion with my boss actually. "They are doing radioiodine treatment. It's over the Easter holidays, but I might need a couple of days off afterwards as I have to isolate." "Oh, is that to avoid infection?" "No, it's just because I will be radioactive and there are restrictions on my being around children, which might include our 1st years (equivalent to year 8s, I think)."

    I spent the time in isolation watching detective shows and messing on facebook. Actually, there is a hospital in England that has a pretty good brochure online about radioiodine treatment. If you google "patient booklet radioiodine treatment cancer" you'll probably find some info.

  • Hello, sorry I haven't responded for a few days.

    I made the most of this weekend as my little boy is now temp living at his grandparents while I self isolate for the op, 

    he's gone back to school today and we don't want him bringing any nastys home that could risk me missing the operation. And we don't want to disturb his schooling. 
     

    I think I'll probably read up on the leaflet after the op just because it will probably make me spiral again, I've spoken to all the people I need to now since my diagnosis (and Thankyou for all you have said). sometimes I think I'm just ignoring it and pretending and sometimes I think I'm being brave, either way, I'm not in a constant state of panic or worry.. so I'm just going to plod on blindly!!! 
     

    I do think after what you said that maybe that's why the consultant suggested a longer stay with the treatment as I have a little boy here at home. And they probably want me to stay away from him. Time will tell.

    ill probably post again after my surgery but for now I'm going to sign off and spend the week mindful and away from my phone. 
     

    wishing you the best, and Thankyou once again.

    x