Has anyone had total thyroidectomy and radioactive iodine treatment?

[lala646]

I had partial thyroidectomy last October, but the cancer they found showed angioinvasion, so I need the rest of the thyroid out, and will need to follow that with radioactive iodine treatment. Wondering if anyone on here has been through it, and can give me any details of what's involved/what to expect?

 

[YadaYadaYada]

I don’t have any experience with this but I just wanted to wish you the best on your journey to healing. It takes a strong person to go through any cancer diagnosis and treatment.

 

[Begonia]

Thinking about you and sending you strength thru this and praying for guidance for your doctors.

 

[Ally T]

No experience here either, but sending gentle hugs & healing vibes across the miles.

 

[missy]

Hi @lala646 I am sorry you are dealing with this. My husband had a TT and partial parathyroidectomy January 2021. We decided against RAI but I had done the research and spoken to others who went through it. I will share what i can remember. One you have to go on a low iodine diet before you do RAI for about one to two weeks. There are groups on FB that can help with suggestions.

After RAI you have to isolate from others. Some suggest 3-4 days others at least 7 days. Ask your physician what they suggest.
Small amounts can be found in the saliva, sweat and bowel movements so these guidelines should be followed.
Do not share cups, glasses, plates or eating utensils.
Do not share towels or washcloths.
Flush the toilet twice and rinse the sink and tub after use.
Wash your towels, bed linens, underwear, and any clothing stained with urine or sweat.
For the first week sleep alone.

Wishing you all the best. For a successful treatment and a full recovery.

 

[Beagles]

My husband had a partial thyroid removal in 2021; after the surgery his surgeon decided a complete removal would best so several months later he had a second surgery. The surgeries were not too bad and he recovered fairly quickly.

The hardest part was the prep for the radioactive iodine pill. Three weeks of no iodine diet -- meaning we had to cook all his food because salt (mainly iodized) is in almost all prepared food! No dairy, bread, deli meat, soup, beans, sausage, bacon, etc. It was a challenge. There is a good cookbook online from a thyroid cancer support group that has a lot of recipes. Also, kosher salt is your friend!

The radioactive treatment was simple with 1 pill. We kept 6 feet distance for 2 days and then returned to normal. Thankfully his test results have been normal since all this. Wishing you all the best!

 

[Arcadian]

My husband has his removed years ago as they found cancer in there (it was encapsulated so no real need) they wanted to do it as precaution, he decided it wasn't worth it. So no experience. he had a hell of a time with getting the thyroid meds right though.


Tons of healing dust. Hopefully it will be a very simple procedure.

 

[MamaBee]

@lala646 I‘m sorry to hear you are going through this..
I didn’t have a definitive cancer diagnosis..My endocrinologist at the time thinks I may have had a very early one..I did have tumors in my thyroid. This was a long time ago so I’m sure they do things differently now. They tried to aspirate or remove tissue through my neck when I was awake to see if cancer was present. The results came back inconclusive..There were strange cells but they didn’t have enough tissue to make a diagnosis. They decided to give me radioactive iodine treatment. I was given the treatment..and isolated in a room for a week. They just monitored me..and did ”Watchful Waiting”..after the treatment..My thyroid gland over time just shriveled up like a raisin. I was told that thyroid cancer grows very slowly so we could always do surgery down the road. I didn’t need the surgery..The radioactive iodine did the trick. This was around 28 years ago.
Hugs..

 

[lulu_ma]

No direct experience here-but I'm sending you healing vibes!

 

[Rfisher]

They tried to aspirate or remove tissue through my neck when I was awake to see if cancer was present.

This. this is my flashback awake nightmare.

Wish I had helpful info for you @lala646
Solidarity to you all.

 

[MamaBee]

This. this is my flashback awake nightmare.

Wish I had helpful info for you @lala646
Solidarity to you all.

@Rfisher I actually had biopsies through my neck when I was awake for two different issues at different times.. The thyroid one wasn’t bad at all..It was over pretty quickly..

 

[Rfisher]

@Rfisher I actually had biopsies through my neck when I was awake for two different issues at different times.. The thyroid one wasn’t bad at all..It was over pretty quickly..

Mine wasn’t.
I’m glad to hear they all aren’t.

 

[lala646]

Thank you all for your kind and supportive words. I've got an appointment with my surgeon again tomorrow, so hope I'll find out more about next steps then. The cancer was very small, and was fully within the tumor on the left lobe, but the biggest concern is that it could recur in my lymph nodes, so I need the RAI treatment so they can monitor for a recurrence with blood tests.

 

[lala646]

@Rfisher I'm so sorry you've had difficult biopsies in the past. Like @MamaBee I've been lucky that mine have all been minimally uncomfortable. I would imagine a lot of it comes down to the skill of the technician, and the complexity of the location being biopsied. A skilled technician is definitely worth their weight in gold.

I was also surprised, when I went for my first biopsy at NYU, they had a therapist come talk to me first, in case I was having any anxiety or fears. That felt really considerate and thoughtful.

 

[MamaBee]

Thank you all for your kind and supportive words. I've got an appointment with my surgeon again tomorrow, so hope I'll find out more about next steps then. The cancer was very small, and was fully within the tumor on the left lobe, but the biggest concern is that it could recur in my lymph nodes, so I need the RAI treatment so they can monitor for a recurrence with blood tests.

I remember an old man in the waiting room before I went in telling me he had one done dozens of years before. He had cancer..but it was small..The treatment took care of it..I don’t remember if he had surgery first..He said he just liked to go back once a year even though his original doctors had released him from checkups many years before. He told me he just takes a pill to replace the thyroid hormone….and not to worry..It was very comforting to hear it from someone who went through it..I hope your surgery and RAI treatment are very successful. XO

 

[lala646]

I remember an old man in the waiting room before I went in telling me he had one done dozens of years before. He had cancer..but it was small..The treatment took care of it..I don’t remember if he had surgery first..He said he just liked to go back once a year even though his original doctors had released him from checkups many years before. He told me he just takes a pill to replace the thyroid hormone….and not to worry..It was very comforting to hear it from someone who went through it..I hope your surgery and RAI treatment are very successful. XO

Agreed. It's always reassuring when you can talk to someone who's been through the thing you're going through, and come out the other end ok.