Encapsulated papillary thyriod carcinoma with invasion diagnosed Jan 21

Hi Alexsmum and a warm welcome to the Online Community but sorry that you needed to find us. I am also very sorry to hear about your Thyroid Cancer diagnosis. This has been such a shock and is a very difficult time to navigate.

Although I had a different type of cancer a cancer diagnosis brings many questions, lots of confusion and stress but talking with other people who are on the same type of journey will help you navigate this rollercoaster ride.

The Community is organised into dedicated support groups and it’s good to see you’ve found our supportive  Thyroid Cancer Forum . I can see you’ve introduced yourself so I’m sure someone will be along soon to answer your questions. 

When you have a minute, it would be helpful if you could pop something about your  journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. (It also means that you don't have to keep repeating yourself.) To do this click on your username and then select 'Profile'. You can update it at any time and if you're not sure what you should write have a quick look at mine by clicking on my username.

Talking with others caring for family and friends will help a lot so do check-out our Family and friends, so you can connect with others walking the same journey supporting family and friends through their cancer journey.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available . You can ask a nurse about medications in our Ask an Expert section, but do allow two working days for replies from our expert team.

Sending you welcoming hugs, B xx 

All the people here who've had TC can help with the advice on medication and RAI  but you may need to tell us what it is that you want to know. 
As for the symptoms, please talk to your surgeon and make sure they know how you are feeling. When you've just learned you have cancer everything that hurts triggers the fear that it's more cancer. I swear if I'd stubbed my toe I'd have convinced myself I had a physically impossible toenail cancer in the months after diagnosis.

Most likely none of these pains are cancer. BUT you need to tell the doctors how you're feeling. When are you lined up for your completion thyroidectomy?

Hi Barbara, 

Thank you for your message. I have mentioned the pain in my neck and shoulders to the consultant. They dont listen to me. Feeling like im being ignored. 

I wanted to know what RAI was like what advise could anyone give me? Like how long is the stay in hospital. Does it make you sick, ect. 

Did anyone have a CT or PET scan after? 

Since covid not much support from the hospitals I have found its all remote not much face to face unless urgent.  I found out over the phone. Its not something I would of wanted to experience. 

This is why I registered to find out a bit more about my diagnosis. 

Thanks in advance 

Hello again, 

that's really helpful. Thank you.

The pain in your neck and shoulders could still be the impact of the surgery. Everything gets cut and moved about and thoroughly shaken up. Tissues were sliced open and need to knit back together, and when something is not 'normal', we tend to overcompensate with muscles nearby. For example, if you had problems sleeping because of the wound, you might have been sleeping in different positions and stressing other muscles or just tensing everything up in a different way.  You're less than two months from surgery and if you've not been given thyroxine (often people aren't) you may also be hurting from that a bit. 

I am not 10 years since RAI and quite a lot has changed but there are lots of people here who've been 'done' more recently and I'm going to ask them to give you an update. If you want to tell us which hospital you'll be doing it at, we might even find somebody who has been there.

I had a CT scan between hemithyroidectomy and completion surgery - but the protocols can differ quite a lot. Pet scans at that stage are less common but may be an option. 

You're in the right place now. We'll help all we can. 

Hi Alexsmum,

I was diagnosed with Thyroid cancer at the end of Nov last year and the cancer cells had gone to my lymphnodes. I didnt really experience pain in my lyphnodes though and only knew to go to docs because my neck was so lumpy for a while after feeling a bit unwell. I have had a bilateral neck dissection removing my thyroid and lymph nodes from my neck and had RAI. The RAI was the easiest bit. I didnt get any side effects and was only in hospital for 24 hours overnight. I was told if there are side effects they are minimal so was chuffed when they were right. The hardest bit was staying away at least 1 metre from my partner for 4 days after I left hospital. 

If you have any other questions for me please let me know.  

Sending love and support.