Need Advice Please

john_vgt

Hi. My name is John and I am a first time poster. I had my TT 3 years ago after having surgery to remove a benign tumor on one side that turned out to be ptc. Recently I had a ultrasound which showed small growth on one side. 7mm by 3mm. About two weeks after the scan I began feeling sick. I have been sick for five days now. I've had swollen lymph nodes (only briefly) in my neck and a tightness and numbness where my thyroid used to be and I've been exhausted. My thyroglobulin has always been between 1 and 2. It's 2 now. My doc wants me to do and rai scan and I'm sure she will want me to do another ablation. She said the ultra sound showed nothing else in my neck and my nodes looked good. The sudden numbness in my neck is driving me crazy. Should I do the RAI with thyrogen or get a PET scan? She seemed unaware of the thyrogen shortage and I had to make calls to locate some. The cancer center had it on back order and was just going to wait but when I pushed the issue they called a local hospital and found some. Is that strange? I guess I'm just tired and freaking out a little and could use some advice!

sunnyaz

Hi John
I have a lot of numbness and tightness in my throat ever since my thyroidectomy. This is pretty normal for PTC cancer patients especially if you are stressed out and it sounds like you are. The nausea could be related to stress just thinking that the cancer could be back. Lymph nodes can swell for a number of reasons. I recently had three flare up, they were biopsied and found to be negative. I have had recurrence in the past so I was very on edge about them. Turns out they were just reactive to the RAI but they were benign.

If your thyroglobulin hasn't changed and the doctor didn't see anything on the ultrasound I wouldn't worry. An RAI scan won't show uptake in the nodes if that is where the possible recurrence is. It will only show uptake in remaining cells that were not destroyed in a prior RAI treatment. So, my advise is to get a PET scan if you are really concerned. Problem is that insurance won't cover it if the doctor doesn't see need or concern and she most likely won't order one.

I hope this helps.

Blessings,
Julie-SunnyAZ

john_vgt

sunnyaz said:

Hi John
I have a lot of numbness and tightness in my throat ever since my thyroidectomy. This is pretty normal for PTC cancer patients especially if you are stressed out and it sounds like you are. The nausea could be related to stress just thinking that the cancer could be back. Lymph nodes can swell for a number of reasons. I recently had three flare up, they were biopsied and found to be negative. I have had recurrence in the past so I was very on edge about them. Turns out they were just reactive to the RAI but they were benign.

If your thyroglobulin hasn't changed and the doctor didn't see anything on the ultrasound I wouldn't worry. An RAI scan won't show uptake in the nodes if that is where the possible recurrence is. It will only show uptake in remaining cells that were not destroyed in a prior RAI treatment. So, my advise is to get a PET scan if you are really concerned. Problem is that insurance won't cover it if the doctor doesn't see need or concern and she most likely won't order one.

I hope this helps.

Blessings,
Julie-SunnyAZ

Hi Julie
Thanks for your reply. I had my second thyrogen shot today. Pill tomorrow and scan on Friday. I feel better (not so tired) and my neck isn't bothering me nearly as much. My thyroglobulin was really .44 my last visit. How invasive was the procedure to biopsy nodes? How did you treat your past recurrence? I did already ask about a PET scan and was told to do RAI scan. Thanks again for replying.

John

sunnyaz

john_vgt said:

Hi Julie
Thanks for your reply. I had my second thyrogen shot today. Pill tomorrow and scan on Friday. I feel better (not so tired) and my neck isn't bothering me nearly as much. My thyroglobulin was really .44 my last visit. How invasive was the procedure to biopsy nodes? How did you treat your past recurrence? I did already ask about a PET scan and was told to do RAI scan. Thanks again for replying.

John

Hi John
Glad to hear you are feeling better. The biopsies weren't so bad. I have a very good doctor. Some experience pain but I just felt a slight pinch. It's just a small needle they use to aspirate. I had three in one day last time I had it done. My last recurrence was surgery to remove the affected nodes and then a second RAI at 178 mCi's. Last Thyroglobulin test was undetectable and my sonogram was unchanged. They saw the same nodes but there was no change and they were already determined benign from the biopsies.

Good luck with your scan. I hope all goes well. You will be in my thoughts and prayers.

Blessings,
Julie-SunnyAZ