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

alex36

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 possibliy caused these nodules. Any insight would be appreciated guys! Thank you!

 

annie4145

I can't help you on your

I can't help you on your specific issue.  Are you treating at a large teaching hospital?  You can research treatments at google scholar, and also check out clinical trials to see if anything would help.  Just hang in there.  You have to stay strong as long as possible.  Eventually they will have cures for all types of cancer.  The key is staying until that time.   I also took some anti-anxiety medicine when I was diagnosed with stage 3a (different cancer type).  It helped me sleep.  Your doctor can help find you one that is compatiable with therapy that you are on.  I have two children 11 and 13, and only can imagine what you are going through.  Luckily, I am NED for 15 months now.

 

 

alex36

annie4145 said:

I can't help you on your

I can't help you on your specific issue.  Are you treating at a large teaching hospital?  You can research treatments at google scholar, and also check out clinical trials to see if anything would help.  Just hang in there.  You have to stay strong as long as possible.  Eventually they will have cures for all types of cancer.  The key is staying until that time.   I also took some anti-anxiety medicine when I was diagnosed with stage 3a (different cancer type).  It helped me sleep.  Your doctor can help find you one that is compatiable with therapy that you are on.  I have two children 11 and 13, and only can imagine what you are going through.  Luckily, I am NED for 15 months now.

 

 

Thank you for that much! I am

Thank you for that much! I am trying to stay strong. I am at UCLA right now but really don't care I will travel anywhere to get rid of this.

Berny72

Similar Condition - How are you now?

I was just curious to hear how things are going 1.5 years later? I have a similar experience.  In May 2020 was diagnosed with Papillary Thyroid Cancer with a baseball size tumor that had grown into my trachea.  Surgery went well with them removing a small section of my trachea, full thyroid, and numerous lymph nodes.  My right vocal cord is paralyzed as a result of nerves having to be removed during surgery.  I went through 36 radiation beam treatments as well as radiation iodine.  My initial ct scan also showed several small lumps in my lungs.  Those lumps were described as "concerning" but as of now (12 months) later they have not grown in size, so doctors are in a "let's just wait and watch" mode.

In the mean time my thyroglobulin levels have been increasing each blood draw. The last level was 450 which increased from 160 in 6 months.  I'm not waiting for doctors to consult and get back to me with a treatment plan.  It's a little concerning because it's pretty obvious the cancer is still present.

I'm curious to hear how you or anyone else is dealing with only one vocal cord.  I'm getting by pretty good, don't expect to hear me talking in a noisy room.