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TT Surgery 5 weeks ago and RAI scheduled for January

TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Mar123 on Dec 8, 2020 2:04 pm

I'd like to know more about others' experiences with RAI and their thyroid cancer diagnosis. How did it go for everyone? How was prep? What foods did you eat? During treatment, did you massage your face to reduce salivary gland infection? My Endo says to NOT eat sugar-free lemon sour candies (even though I've read this is good in order to avoid infection). Anything you can share is much appreciated.  Loving the pouring rain today.

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Lacey_Moderator on Dec 8, 2020 2:31 pm

Hi Mar123‍ 

Welcome to the site! You ask some great questions.

I'd like to introduce you to Lia‍ and DC55‍ who have experience with RAI. Can you both help with Mar's questions?

When is your treatment scheduled for?

Lacey

Also here is some info from cancer.ca 


Radioactive iodine therapy

Radioactive iodine therapy is sometimes called RAI therapy. It is a type of systemic radiation therapy commonly used to treat thyroid cancer. A radioactive material called radioactive iodine, or I-131, is given by mouth and travels throughout the body. Both healthy and cancerous thyroid cells absorb, or take up, the radioactive iodine. The radiation destroys the thyroid tissue and cells.

Radioactive iodine therapy is usually given after surgery for intermediate- or high-risk differentiated thyroid cancer (papillary or follicular carcinoma). It is also given after surgery for most poorly differentiated carcinomas. Radioactive iodine therapy is used to kill any cancer cells and normal thyroid tissue that remain after surgery. This can help prevent the cancer from recurring. It is also used to treat cancer that has spread to lymph nodes or other parts of the body.

Radioactive iodine therapy doesn’t work for all types of thyroid cancer because some cancer cells don’t absorb iodine. You may be given a small test dose of I-131 to see if the cells absorb iodine.

Radioactive iodine therapymay be offered if the:

  • tumour is larger than 4 cm
  • tumour has grown through the thyroid and spread to nearby tissues and structures
  • cancer has spread to many lymph nodes in the neck
  • cancer is an aggressive variant of differentiated thyroid cancer, is poorly differentiated carcinoma or has other high-risk features when seen under a microscope
  • cancer comes back in the same place or close to where it started (called a local or regional recurrence)
  • cancer has spread to other parts of the body (called distant metastasis)

 

Preparing for treatment

The normal amount of iodine in the body needs to be lowered before radioactive iodine therapy starts. This will help the radioactive iodine to be absorbed. When there is less iodine in the body, the pituitary gland makes more thyroid-stimulating hormone (TSH) and releases it into the bloodstream. High TSH levels will make any thyroid tissue and thyroid cancer cells absorb radioactive iodine.

To lower the iodine in the body, you may be told to follow a low iodine diet for 1–2 weeks before treatment. You should avoid or limit salt and salty foods, milk and milk products and seafood. Ask your healthcare team for a complete list of foods to avoid or limit.

People who have had a thyroidectomy to treat thyroid cancer usually have to take hormone therapy with levothyroxine (Synthroid, Eltroxin). This drug replaces thyroxine, which is a hormone that would normally be made by the thyroid. It also lowers the amount of TSH in the body. To increase TSH levels, you may be asked to stop taking levothyroxine for several weeks before you start radioactive iodine therapy.

Another way to increase TSH levels is to give a drug called recombinant TSH (Thyrogen). It is an artificial form of TSH that is given by injection into muscle usually once daily for 2 days before radioactive iodine therapy.

During and after treatment

Your body gives off small amounts of radiation during and for some time after the treatment. Once the dose of radioactive iodine is given, you will need to stay away from people for a few days. This may be done by staying in a private room in the hospital or treatment centre or by following special precautions at home. Talk to your healthcare team about safety precautions you will need to take while in the hospital or at home to protect others from exposure to radiation.

A radioactive iodine scan is a nuclear medicine imaging test that uses radioactive material to examine the thyroid and look for any abnormal areas or thyroid cancer cells in other parts of the body. It is usually done about 1 week after radioactive iodine therapy. It is also repeated 6–12 months after radioactive iodine therapy to check how the cancer responded to the radioactive iodine therapy and if there are any cancer cells remaining. You may need to have more radioactive iodine therapy if cancer cells are found with the scan.

Blood tests are also done to check if you need more treatment. The healthcare team will measure the levels of thyroglobulin (Tg) and TSH in your blood. Abnormal levels may mean that cancer cells were left behind after radioactive iodine therapy or that the thyroid cancer has recurred. An ultrasound of the neck may be done along with the blood tests.

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by DC55 on Dec 8, 2020 5:40 pm

Hi Mar123‍!

I did RAI in July after two surgeries. Overall it wasn't too bad, I just felt like I had a cold for a few days. I also experienced fatigue for a bit following it, but that had been an overarching issue with me so that might not happen for everyone. You will have to isolate for a few days, but definitely give yourself at least a whole week off to sleep it off. 

The diet was definitely the hardest part for me. I am a bit of an emotional eater, and I love dairy, so it was difficult for me when I couldn't have cheese and ice cream. I would stock up on snacks like dark chocolate, unsalted nuts, and candies that are allowed. I ate a lot of homemade guac/salsa and low sodium corn chips. Or I would make chips from tortillas. I ate a lot of chicken, salad, potatoes, and rice. I made a balsamic dressing using kosher salt that I used on EVERYTHING. I put it on my salads, my rice, and marinated my meats in it. I got the recipe from the THYCA cookbook. I would definitely check out thyca.org bc they have a full cook book.

I didn't really worry about salivary gland infection, but I did have a lot of lollipops and jolly ranchers mostly to help with the weird feeling/taste in my mouth. But that only lasted the first two days. 

Hope this helps,

Darrah

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Mar123 on Dec 9, 2020 8:55 am

Hi Dara DC55‍ , thks for your reply. It helps. How are you today - any lingering side effects? Were u on a high dose, ie over 100. Sorry for all the questions, hoping all this we go through actually pays off (no recurrence and we lead a healthy long life) while not affecting quality of our life too much. I hope thats not asking too much.  I am grateful for my life and do not take anything for granted anymore. Sure has been an eye opener. 
 

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Mar123 on Dec 9, 2020 9:06 am

Oooops. Spelled ur name wrong, my apologies Darrah.
Replying to a question from someone else re my scheduled RAI. Still learning this posting and replying stuff.  It is January. No date set yet, drs office to get back to me, 

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Lacey_Moderator on Dec 9, 2020 10:28 am

Mar123‍ 

So glad you have heard from DC55‍ so kind of them to share their experience. 

To tag someone in your posts type the @ symbol and their username. They will then be notified of your post :)

So glad you found our site,
Lacey

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Lia on Dec 9, 2020 11:45 am

Hi Mar123‍ ,

Welcome to the site! I went through this 5 years ago now (can't believe it's been so long) with no recurrence. I'm at a point now where I don't really even think about it much anymore apart from taking synthroid every day and when I have my yearly check-ins. I hope it's the same for you! 

I believe I had a fairly high dose of RIA, and I felt barely anything physically. I found it to be more psychologically challenging to be isolated for 2 weeks. Doorway visits from family were nice though! One of my biggest annoyances was in hospital when they kept giving me fruit with peels - which I had to cut into tiny pieces with a plastic knife and flush down the toilet 😂🤦🏽‍♀️

I don't remember exactly what I ate now, but I also found the THYCA cookbook to be a life saver. And reading labels METICULOUSLY for pre-made food. Here's the link:
https://static1.squarespace.com/static/58ff955aff7c503f699674d7/t/59754ff83a041155fa4a65ce/1500860412769/TCC_LID_Booklet_E_web_2017.pdf

Happy to answer any other questions you may have. Hope you're taking care.

Lia

Oh, and P.S. I believe I did use the lemon candies and didn't have any issues with salivary glands. I did find my eyes got drier after RIA, but that was always an issue for me so it may not have been related. And I did massage my face, yes.
 

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Mar123 on Dec 10, 2020 2:53 pm

Hi Lia‍ thank you for responding, much appreciated and helpful. If I may ask you another question. How big was your nodule/cancer in thyroid and had it spread locally, ie any surrounding tissue? Did you get a total thyrodectomy (sp?) or one side out? Were you told if you were low risk? medium risk? for recurrence.  Did you change your diet in any way to help build stronger immune system or just did what you normally did? THANKS!!

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Lia on Dec 10, 2020 5:55 pm

Hi Mar123‍ , glad to be of help! 

How big was your nodule/cancer in thyroid and had it spread locally, ie any surrounding tissue?

- I had 2-3 nodules, the biggest being ~1.5 cm and the smallest being too small to biopsy. They diagnosed after my surgery that cancerous thyroid tissue had spread to 8/10 of the surrounding lymph nodes that they removed. This freaked me out, but they assured me that this type of local spread is not a great concern. It was still just the thyroid cancer, which doesn't turn into other types of cancer.


Did you get a total thyrodectomy (sp?) or one side out? Were you told if you were low risk? medium risk? for recurrence. 

- I had a total thyroidectomy. I had the choice but figured if I'm going to be on medication for life anyways I may as well go for it. (I also didn't want to do a second surgery if needed down the road).
- I did a MACIS score at the start. I can't recall my initial score, but I believe my score was around 90% chance of surviving another 30 years. I've most recently been designated as "low risk" since I responded well to the treatment (RIA). I believe my type is generally highly survivable (papillary thyroid cancer).


Did you change your diet in any way to help build stronger immune system or just did what you normally did? THANKS!!

- I mostly did what I normally do, apart from thinking a bit more about vitamins and eating healthy. I have a sensitive stomach and couldn't really tolerate Circumin and other alternative remedies. I didn't find it necessary (and my doctors didn't recommend) changing my diet significantly, but I think that part is maybe more personal re: what will work/feel healing for you? I found things like meditation, time outside, exercise, and animals to be most healing for me. :)


How about you? Are you dealing with a similar diagnosis?

Lia

Re: TT Surgery 5 weeks ago and RAI scheduled for January

Posted by Mar123 on Dec 13, 2020 8:45 pm

Hi @Lia, 
My nodule was 3.5 cm. I am in my late 50's which I'm sure you know, doesn't help because this type of cancer takes age into consideration. I'm worried about recurrence as it did invade the muscle (nothing found in lympth nodes though). A big thank you for sharing your experience. I'm hanging here at least until I know I'm clear and then it'll hand over my head again (in between blood work, etc). I also feel at times, a pressure in my right ear and (less often) sharp pain in my left eye. Fingers crossed this is not related to thyroid surgery/cancer. 
Thank you for sharing your info, it did help!