Diagnosed thyroid cancer

Sorry you are feeling this way.  Ive only had half my thyroid removed so can’t really relate to what is happening to you. 

it’s scary and every ache or cramp or anything different I’m reaching out for Dr Google. 
I’m also feeling quite down at the minute.  All normal apparently but it doesn’t make it easier.

you’ve reached out which is good.  Mentally and physically you are going though a lot so feeling scared, sad alone I’d say I’d all normal but hopefully someone with a bit more insight will reply to you. X

Hi Lovely,

It's thank you so much for sharing how you are feeling. This forum is great for connecting with people who know exactly how you're feeling when maybe others around you find it hard to grasp. I still post on here whenever I am looking for advice or need some support. 

I had a full thyroidectomy and right side neck dissection in April 2024. After my surgery I was on 8 calcium tablets a day for 6 months then I was taken off them for 6 months in the hope that my parathyroid would kick in, unfortunately it didn't and I am back on the calcium tablets. I take 6 a day along with vit D. Unfortunately my parathyroid didn't recover and I am on calcium tablets for the rest of my life, I have been told this is not very common and for most people the PTH will have a full recovery it just takes a wee while. I don't mind being on the tablets, they make me feel better and stop the numb tinging feeling that I experienced. I am on Adcal-D3 Caplets which aren't chewable, to begin with they would only give me chalky chewable ones.

I completely understand going to google for some research we have all done it. I would say stick to Macmillan's site they have a lot of factual information. I asked for the book understanding thyroid cancer from Macmillan, I found that worked for me as I was able to put the book down once I had found the relevant information instead of getting stuck down rabbit wholes online. I've attached the PDF version below, Macmillian can post a physical copy to you. https://www.macmillan.org.uk/dfsmedia/1a6f23537f7f4519bb0cf14c45b2a629/18973-10061/mac11655-e11-thyroid.pdf

RAI, I had mines in June 2024, I had to isolate for 3 days in hospital. I have heard every hospital is different, my room had a fridge, a tv and landline. Take in all your favourite snacks, be sure to include sour sweets such as sour patch kids, my salvia glands took a bit of a hit to the treatment which again is really rare I think my doctor said this only happens to less than 5% of people so they don't normally mention it. I wore old clothes that I used for painting so I was all mismatched with random patterns and colours. I wasn't allowed to take anything home with me apart from my phone once it was cleaned so I wouldn't take anything with you that you wouldn't want to loose. Be sure to take fresh clothes for leaving, these will be kept in a separate room to keep them safe from radiation. I used the time to catch up with old friends and watch movies! It goes in faster than you think it will.

It will take sometime to adjust to this new normal, and for you to get back to feeling more like yourself, you are doing amazingly, you should be proud of yourself for reaching out on here as well as I know from experience it can be a bit daunting at first. I can see now my message is extremely long, I just wanted to be sure I got all the information to you as theres things I wasn't told that I wish I had been! All the best with your RAI. Feel free to message more questions, I'm more than happy to answer 

Hi Thank you so much for the reply . 

The iodine radiation is more involved than I anticipated. How long are you away from friends when you get home ? This is a concern for me . 
Do we get tested to see if radiation has reduced regularly after leaving hospital?

We found my cancer by accident it was stage 2 and had attached to my trachea . It does have a tall cell variant within it so I’m advised this carries a higher risk of return . Treated with a bit more respect the surgeon stated . This has all happened so quickly I’m trying to get my head around it all so I deal with what I know factual and not what if’s although some days that does come into my head but I try to keep it factual. 

I found reassurance on these threads which is why I posted up . 

My results of the labs testing of my second part of thyroid is next Wednesday . I just hope this is all good news . 

Thank you for taking time to respond xx

While in the hospital for RAI treament I was tested for radiation levels every day in the hospital, I was checked twice a day it may be that you get out quicker than 3 days. I was also scanned to see where the radiation was taken up in my body before I went home.

I was given the highest strength so it took a bit longer to leave my body. Once home I had to take precautions for a few days and then I could go back to normal. I was told I can be in the same house as my family but yo needed to keep my distance. Avoid contact with pregnant people, children and pets, and any situation where you will be standing or sitting next to someone for a long time. You should get all this information before you have your treatment. In my experience you leave the hospital you won’t be checked for radiation again. Each experience will be different but this was mines. I’ve shared a link with more info on RAI.

 https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/radioactive-iodine-for-thyroid-cancer

Ah I see, I had papillary thyroid cancer without a tall cell variant so a wee bit different from yours. I’m sorry to hear it’s all been very sudden, the good thing is they’re acting quickly. I completely understand it is hard to not let your mind wonder, you’ll receive lots of support and shared experiences here it’s a lovely community. 

I hope all goes okay on Wednesday for you

Hi there, I had part thyroid removal and then full after they found cancer had spread out from thyroid.  I totally understand where you are coming from and it will get better but it is early days for you.  My advice would be to get as much information as you can, learn about your body, what you eat etc.  Do not be afraid to ring your nursing team if you are concerned about a new symptom.  I was ringing or sending emails every other week and I used to say I would rather you tell me I am paranoid than you say it has come back!!  They were always lovely and very reassuring .  This is a major bump in your life map and it is perfectly understandable that you are feeling the way you do. Take care xx 

Hi Vivienne

Thank you for taking time to reply . I don’t have Macmillan nurse team as yet as I did my surgery privately as I had private health insurance and I’m not sure which support is available. 

I can normally be really strong and deal with things as they come but until the lab results come through I don’t know what this all means . Is it gone ? Am I on shorter life ? Is it being monitored regularly? 

was your cancer standard papillary ? Where did it spread ? To lymph nodes? 
How long ago was your surgery? 

sorry for questions you do not have to answer x

Hello Ellie, my cancer was diagnosed in 2019 and had two surgeries in 2020. I am monitored yearly but my GP will deal with me immediately if I suspect any change.  Mine had spread to nearby lymph nodes.  This was my first real health crisis and I did have a very hard time mentally and my local Macmallan Cancer centre gave me a therapist for a year.  I needed it believe me as I lost the plot at the time.  Do not be afraid to ask for anything that is on offer as there really is a lot.  Do not be hard on yourself either for not being strong.  As I said, I was nuts for a while!!!! 

Hi, I had my whole thyroid and all my lymph nodes removed 10 days ago. Post surgery I have low calcium and am on thyroxine (for life). My understanding is that low calcium is fairly common after having lymph nodes removed- the parathyroid can be damaged or accidentally removed during surgery which causes it. I started on 2 calcium tabs a day and was told to reduce after a week but take more if symptoms returned. I’ve been told to go to A&E if symptoms don’t respond to increased tablets (max 6 in an hour). Please try not to worry (easy to say I know)- you’re not in your own and we can support one another by sharing our experiences here. Thyroid cancer is rare so connecting is really helpful 

Hi

Thank you for your reply . 
I thought once they removed the thyroid everything was going to be all ok but then the lab results showed some Tall Cells which apparently means it can be more aggressive. 

I have my consultation with the consultant tomorrow for my Radiation so I will find out dates to have this completed. I am seeing my consultant next Friday for Lab results post Operation results . 
I am 7 days since second surgery . My wound has been sore and swollen . I also get palpitations a bit and can feel anxious at times . 
when are you seeing consultant again ? 

Hi, I’m not seeing my consultant until 30th (5 weeks after surgery) which feels like a long time. Are you having radio iodine treatment? I’m having that in January. I think palpitations can mean your dose of thyroxine may be too high. Please let me know how you get on x