Paulie,

I'm a thyroid cancer survivor. Had surgery and ablation 10 years ago. I understand completely where you're at and where you'll be going.


You'll stay in my prayers,

Donna

Hi Everyone,

Sorry it has taken a few weeks for me to let you know what has been happening. I had my surgery on November 10th. I was first on the list so at least I didn't have to sit and watch everyone else having their breakfast and lunch when I was "nil by mouth" This is the first time I have walked to the operating theatre. I had a nurse on one side and my husband on the other. He said it was like marching a prisoner to the firing squad - thanks honey!

The anaesthetic was administered and I was out like a light. The next thing I knew I was waking up in the recovery room. The first thing I did was check if I could still speak. That was one of the main concerns that my surgeon had. I'd been in recovery a few minutes when my surgeon came in and told me that the operation had gone really well and that he was greatly relieved! That made 2 of us After an hour or so, I was taken back to the ward and my husband came in to see me shortly afterwards. I didn't feel as tired as I have done after previous surgeries and according to my mother, my voice wasn't as squeaky! I didn't have any drains and my wound was very neat and was stitched from the inside. Previously when I've had thyroid surgery the wound was clipped with metal staples

I was on morphine for a couple of hours and was then put on good old paracetamol. I wasn't in too much pain considering. I was allowed home on the Saturday. My calcium levels had dropped slightly but I was told that I could go home as long as I returned the following day to have a blood test.

My neck was quite swollen for the first week, but is settling down again now. I go back to see my Prof on December 20th. Hopefully I will then get an indication as to when the radioactive iodine treatment will begin.

Thanks for all the good wishes.

I'll keep you posted.

Well I get worried when you don't post for nearly a month! I'm happy things are looking good for you and you still have your voice. I hope, hope, hope everything will settle and fly right for you thyroid (should I say nonthyroid) wise. That must have been really hard walking into the operating room, shesh.

Wishing you good luck and blessings Paulie!

Congrats, Paulie! I'm happy to hear it went well!

Thanks Nancy.

Hey Paulie and the rest of you. I just thought I would come in and say hi.

I had my first thyroid surgery in 2002. I small piece of cancer. They decided to just monitor the second side. Well this past December 8th 2005 I had the remaining side out. 2 nights in the hospital as my calcium had dropped. I got my Path report Monday Jan 2nd 2006. 3 small pieces of Cancer in the remaining side. BIG HONKIN SIGH. So I will have to have Radio Active Iodine done. I am going to use Thyrogen so I dont have to go hypo. They will keep my TSH low and I am now lowcarbing with a vengence. I turn 40 in Feb and just so want to be happy, healthy cancer free and thinner.

If you ever want to chat or email just let me know

Katie

Good luck, Cath! I had RAI 18 years ago for my Graves. Do they tell you about patients setting off radiation monitors nowadays? I have heard of thyroid patients getting strip searched when they set one off! Maybe it is different in Canada.

Hi Cath and Nancy,

I now have an appointment to go to the Cancer Centre on February 6th to see the oncologist. Hopefully they will be able to give me a date to start the changeover to T3 and then coming off all my meds to have the challenge scan.

Here's hoping I don't set any sensor's off anywhere

Thanks for the kind words. I see a Specialist on the 6th as well. Not sure when my RAI will be scheduled. Hopefully come May I want to push it back as then I can stay in my moms gorgeous trailer and she can come here for several days. That way I won't be near my girls.

We shall see

Good luck at the specialist. Let me know how it goes

Katie

Wishing you gals good luck and blessings with your health issues. May you have the strength to fight the fight.

Hi Everyone,

Well, tomorrow is "scan day" - at last. I will have been off my thyroid medication for 2 weeks (seems longer I have to say ) Anyways, I have to be there at 9am to get the radioactive capsule and then go back at 3pm for the scan. I will only be getting a very small dose of radioactivity tomorrow just enough to show on the scan to see if the thyroid area will take up the radioactivity as it has been starved of iodine. I don't have to stay at the hospital and will probably go into town for a wander around and maybe meet Derek for lunch or something.

Sleep-wise not much happening. I can sleep when I don't really want to and vice versa - still I'm not at work so it doesn't matter too much. When I do sleep though I'm having some really weird dreams The cats seem to know there's something not quite right. When I woke up I had one on either side of my head .

Hugs

Oh yeah! I had that done with my Graves. Good luck! Its a pretty mundane experience.

Good luck Paulie,
So what does this test mean?

That test shows how quickly your thyroid sucks up iodine. I think iodine is used to create thyroid. Paulie would know more, I'm sure. It has been 20 years for me since I had mine. But the radiation might stick around in the thyroid and show which parts of the thyroid are the most active. So perhaps it would show "hot-nodules". But I'm not positive about that.

What is radioactive iodine?


This is also called internal radiotherapy. The treatment uses a radioactive form of iodine called iodine 131 or I-131. The radioactive iodine circulates throughout your body in your bloodstream. Thyroid cancer cells will pick up the iodine wherever they are in your body. The radiation in the iodine will then kill the cancer cells.

This is a targeted treatment. It will not affect other body cells as it is only thyroid cells that pick up iodine. The treatment is only suitable for some types of thyroid cancer. It is used for

• Follicular thyroid cancer
• Papillary thyroid cancer

Even if you have one of these types of thyroid cancer, this treatment may not be suitable for you. You will be given a test dose to see if your cancer cells pick up iodine. Not all do.

Radioactive iodine treatment is given

• After surgery to kill any cancer cells left behind
• To treat thyroid cancer that has spread
• To treat cancer that has come back after it was first treated

What do I do to prepare for this?


Before you are treated, your doctor will ask you to stop taking thyroid hormone tablets. This will be for 4 weeks if you are taking T4 (thyroxine) or 2 weeks if you are on T3 (tri-iodothyronine). This is because the I-131 works best when the levels of another hormone called TSH (thyroid stimulating hormone) are high. The levels of this hormone in your blood will begin to rise as soon as you stop taking thyroid hormone tablets.

In some situations, you may not be started on thyroid tablets until after surgery and radioactive iodine treatment have been completed.

3 weeks before you have this treatment, you will be asked to start eating a low iodine diet. This is because too much iodine in your body can mean that the treatment does not work so well. You should cut out any food coloured pink with the additive E127. So, do not eat

• Spam or salami
• Tinned strawberries
• Glace cherries
• Pink pastries or sweets (look on the labels for E127)

You should also not have

• Iodised table salt or sea salt
• Cough medicine
• Fish and seafood
• Vitamin supplements that say they contain iodine

Dairy products contain some iodine, so cut down on eggs, cheese, milk and milk products. You do not have to cut these out altogether but have as little as you can.



What happens when you have the treatment


To have the treatment, you will have to come in to hospital for a few days. You will be looked after in a single room. The treatment will make you slightly radioactive for a few days, so the time that the staff and your visitors spend with you will be limited for their protection. Your sweat and urine will be radioactive during this time. The hospital may have rules about changing your sheets daily and may ask you to flush the toilet more than once after you have used it.

To have the treatment, you are given a drink or capsule or the iodine can be injected into a vein in your arm. Your nurse will ask you not to eat or drink for a couple of hours so that your body can absorb the iodine. After that, you can eat normally. You should try to drink a lot to flush any excess radioactive iodine out of your system.

You will have to stay in your single room for a few days until your radiation levels have fallen. A radiation monitor (Geiger counter) may be used to monitor you or test anything that is taken out of your room. You can bring videos, tapes and books in to keep you entertained. Anything that comes out of the room will be monitored and it may be that some of your possessions are kept on the ward for a couple of days if they have been contaminated. After that time, they will be safe again and will be given back to you.



After your treatment


After a few days, you will have a scan to see if the radiation has dropped to a safer level. Once it has, you will be able to go home. You may be told that you shouldn't be in contact with children or breastfeeding mothers for a short time when you get home. Check this with the staff before you go home. So that you're sure about what you can and can't do and how long you have to take any precautions for. Your nurse will tell you when you can start to take your thyroid tablets again. Usually, this is 3 days after you had your treatment.