Treatment Options for Thyroid Cancer

Hello

i had a diagnosis of a rare and aggressive version of papillary thyroid in  January 22.  Totalt thyroidectomy and then radioactive iodine.  I take levothyroxine daily and live a completely normal life.  I don’t feel that I have any negative effects at all.  
so far so good! 
good luck ! 

Hi,

I was diagnosed in January. Treatment was on hold until I finished chemo/radiotherapy for breast cancer. 

I had the right side out on Oct 17th, which showed multiple foci of cancer with some growth around the nerve, not just a single nodule. I had the left side removed yesterday, calcium levels and parathyroid hormone level post op was OK, so I came home last night. I started thyroxine this morning and so far have no signs of a low calcium. I'd rather make sure there are no cancer cells on the other side and knew this was a possibility but hoped to get away with just 1 side coming out.

Taking a tablet and a few extra blood tests seem, for me, a small price for piece of mind. I also trusted my surgeon wouldn't do it unless it was needed as I'm not straightforward when it comes to these things and we had discussed this prior to the original surgery. I also know many people who take thyroxine without any issues, which was reassuring.

Radioactive iodine is recommended and I'll have that at some point as I'm unsure all the cancer cells were removed last time.

Do you have a CNS to talk to? They may be able to give you more information. 

Best wishes whatever you decide.

Thank you for taking the time to reply. It's so appreciated. I hope your recovery is going well. I don't have a CNS but will follow that up. Best wishes.m to you.

Hi Dee Va,

I am exactly in the same situation as yours. I had my right thyroid removed last 26th November and pathology results confirmed cancer (2 foci- 5mm tall cell variant and 2mm small cell) and the bridge on my thyroid has been removed as well so it doesn’t spread. The surgeon said that cancer hasn’t spread and the other thyroid is fine. I’ve been told to take the other thyroid as well once I’m finish with my targeted therapy ( taking Osimertinib for 3 years after lung surgery). And now I have been told that they need to take the other half ( 06 January 2025) and will have radiotherapy injection ( one-off ) and will be with iodine supplement for life. I am undecided whether to have another surgery or it is necessary to have it removed, what choice do I have? I need some advice if any in this community have the same experience .

Hi Grace516 

Did you go for your surgery in the end? If so, hope everything went well. I have my second thyroid surgery tomorrow. 

I've done a lot of research and I feel like taking the second thyroid out followed by radio poses more risk to the healthy me but I am being told the risk is higher keeping it in.

I feel really out of control of the situation and I hate that. I'm going with the recommended approach, I am not happy with it, but I don't feel like I have much choice. I wish there was more research on alternative treatments which is less invasive. 

I hope your recovery is going well. Sending you positive virtual vibes. 

Hi there, can I please ask what dose RAI you had? I have similar and am concerned about side effects of 3.7 dose. 

I just had my second (total) thyroid surgery last week. I am on thyroxine now, feeling quite low. 

Next step is iodine radiotherapy. Told it will be 1.1gbq dose. Which is the lowest, 3.x is the medium dose, I believe.

Exactly my concern, told having the RAI outweighs the risks of not having it. But I am really concerned about it triggering secondary cancers as RAI can inadvertently mutate healthy cells too. 

I spoke to my oncologist who said I have a choice but this is the recommended approach if I want a cure. Such a difficult position to be put in. What's the reason for the medium dose...they they explain it to you, can you ask for the lower dosage? 

I can get the lower dose, but it's more to do with tall cell presence, apparently more aggressive. So they are saying I could choose 3.7 or risk recurrence at 1.1. Basically it's up to me, based on my own consideration of risk and acceptance of possible side effects. 

That's tough. I appreciate how difficult it must be to make that decision. Unfortunately we are at the mercy of the professionals and their recommended approach. But you almost have to weigh up the risks and base your decision on what you believe to be worse. Impact on the healthy you due to dose vs risk of reoccurrence. 

Just putting it out there. Is x2 small doses an option? 

• I had a TT in Feb 22.  Then 3.7 in May22.  I had 50% tall cell variant. 
  
  
• in the November they found more cancer but the surgeon wasn’t confident he could find all the small bits so I opted for another rai dose but this time they gave me the highest dose 5 something in January 23. 
  
  I have had no negative issues so far and since last summer I am on  annual checks. 
  
  My husband died of a rare bowel cancer a few weeks ago, diagnosed almost 5 years ago, so my own cancer has rather been forgotten recently!