Partial removal to now all having to go

Hi SC69 your message popped up so thought I would reply. When they diagnosed  the first half of your thyroid did they do an ultrasound or biopsies elsewhere on your neck? I had papillary thyroid cancer one year ago and was given ultrasound then 2 biopsies and therefore a full thyroidectomy but I knew I had cancer  before my surgery and it had spread to my lymph nodes as is common with papillary. Had left neck dissection. Before my tests they were going to remove only half of my thyroid but after CT scan on neck and chest I got the full Monty! I am back to normal- whatever that may be. Living life to the full and very thankful and grateful for the care and treatment I received. Please ask your consultant or specialist nurse anything you’re unsure of. I am sure all will be fine and just take each day as it comes. Take care of yourself x

The consultant rang and said they would remove other half as cells may have infected  it, I originally had a biopsy on lump before it was removed , result came bk inconclusive 

Hi, I am in the same position as you, had half removed, cancer was in my lymph nodes so now need the rest removed and RAI, still feeling very raw after last surgery, surprised at how long it is taking me to recover.  The spreading is a worry but I assume they will keep us checked but I don't know how yet.

Sending you best wishes, I hope you get some answers X

Hi im just home after having other half removed.... so next stage is to be referred to oncology for tests to make sure no more cells hanging about,  maybe a radiation tablet.... iwas surprised how many tablets  I need to take for life thought was just going to be thyroxine,  but need calcium twice a day and a vitamin d tablet too.... Good luck 

I did not know it would be that many tablets either, one of the things i have found hard is the lack of information, makes me feel really out of control.  I hope the second surgery went well and you recover quickly

Hi Daisy7 I had half out in Feb and then other half out in April. I knew it was papillary cancer before the first surgery but they found more cancer with each surgery (and some tall cells) so now I’m waiting on RAI. 

My understanding from oncology team is that they will track me through blood tests looking for markers of cancer there and I think some people also get ultrasounds but I think that’s maybe for people who still have some thyroid left. I think the main indicator is my TSH level. My nurse explained yesterday that I will be on an increased dose of thyroxine for the first 9-12 months to completely suppress any thyroid function from stray cells that may have been left. I may be wrong but I think that’s what they watch to check for signs of cancer reoccurrence but it’s not definitive - as in, your TSH could rise without it actually being cancer again.

A lot of waiting and watching as near as I can tell. 

If it makes you feel any better, I only take two small tablets of thyroxine daily (will probably go to one after the year). My calcium levels are fine, as are my vit D levels. 

Good luck!

It is possible that your Parathyroids will improve with time, unless they were removed during surgery, and you may be able to come off Calcium and Vit D.  I needed both after surgery and was monitored for around 7/8 months, having regular blood tests.  I was told my Calcium levels were fine at the last test and Vit D levels too.  Still taking one Vit D tablet per day though of Colecalciferol prescribed due to the fact that I don't go out a lot and just because we all need a boost from time to time especially during the winter months.

This is all very positive and reassuring :-) it's so good to hear everyones stories.  I had an appointment last week at the Royal Marsden to discuss RAI and spent a long time with an amazing nurse who has really helped me understand it all. It seems so many of my worries now have names, the swelling above my scar seems to be some lymphedema, and the lump I feel has a name too, just realising it's all a possible part of the process really helps.

Thank you to all of you for your comments and stories, it really helps