Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

36 year old male with papillary thyroid cancer spread to the lungs

alex36
Posted by

Hey guys, thank you for being here. A few months ago, I found a large bump in my right side of my neck that ended up being a 10cm large mass and two smaller ones on the left side of my thyroid. Long story short it ended up being papillary thyroid cancer, had my full thyroid removed, right vocal nerve removed (losing function of my right vocal cord,) one parathyroid and 92 lymph nodes with 36 testing positive for the cancer. I just did my radioactive iodine 150mci and had a full body scan five days later and the radiologist found multiple small nodules in my lower right lung with the largest being 8mm. None of the nodules seemed to have any radioactive iodine uptake.

 

Here is part of the report

 

IMPRESSION:

1. Foci of iodine uptake in the neck, compatible with residual thyroid tissue status post thyroidectomy.

2. Mild iodine uptake in the region of the thymus, nonspecific, but may represent physiologic thymic iodine uptake.

3. Multiple bilateral pulmonary nodules measuring up to 8 mm in the right lower lobe, suspicious for pulmonary metastatic disease. No definite iodine uptake is seen in the region of the pulmonary nodules, as the small nodule size may be below the resolution threshold of SPECT. Attention on follow up examinations recommended. 

 

I read online that patients who see no iodine take up in the first round generally have no improvement with a second round of radioactive iodine and wanted to hear if anyone has a similar story? With 3 small children I am going crazy and can barely sleep. Because of loss of one of my vocal cords water kept going into my lungs, I am also wondering if that could've possibly caused these nodules. Any insight would be appreciated guys! Thank you!

PhoenixRising
Posted by

Hi Alex. Im afraid I cant offer any sensible advice on your question as I have no experience of this. Im sure Lass or someone who knows more will be along soon.

But I just wanted to send you a big hug. I totally relate to the awful feeling of going crazy and being unable to sleep. Please try and look after yourself. I know thats SOOOO much easier said than done though. Try and stay away from Dr Google. I know I used to sit awake for hours scaring myself absolutely  to death reading things. I know its not easy to stop but please try and put it down and get some good sleep. I found self hypnosis apps on my phone really helped or calming binaural beats music to sooth my panicking brain

Sending you lots of love. I hope you get some more useful answers soon. Big hugs xxx

Thyroid cancer warrior

alex36
Posted by

Thank you so much means a lot :)

PhoenixRising
Posted by

No problem. You take care of yourself and try and get a little sleep. :) xx

Thyroid cancer warrior

PhoenixRising
Posted by

actually, just wanted to add too.. having reread what you put in the original post.

from my reading of the report they are saying there's no iodine uptake seen possibly because the nodules may be below the imaging resolution of SPECT/their equipment. I read this as they are saying they may be too small to show up as they may be below the size of what they can see with their equipment. Not necessarily because they aren't taking up iodine. They may be just too little to show up.

Thats just my reading of the report though and I am not a doctor /nuclear specialist

Thyroid cancer warrior

alex36
Posted by

Thank you for that. You are right! Happy Holidays, bless you

PhoenixRising
Posted by

Thyroid cancer warrior