Conflicting information / Need Help!

[Batty1]

Hi again

As your aware from previous post about a whole body radioactive iodine test I had done and it shows thyroid cancer recurrence and spreading into my lymph nodes. My intern Endo called confirmed that scan revealed recurrence but my thyroglobin and thyroglobin antibodies tested normal so he doubts I'm having a thyroid cancer recurrence and that I could be 25% of the population that will always have a normal thyroglobin and thyroglobin antibodies and would confirm by talking with the other Dept. Endos.

My intern Endo called today left message and said "You don't have Thyroid Cancer again so we dont need to do anything further, but he would call me back on Wed to further explain.

Out of shear stress from this message I read my Radioactive iodine test scan report again and the Nuclear Medicine Doctor made and amendment to my scan results.....Below is the ammedment⬇️

(Given the patient history, the findings most likely represent residual functioning thyroid tissue in the neck following prior total thyroidectomy in the absence of subsequent radioactive iodine ablation; although unlikely, lymph node metastasis cannot be entirely excluded.)

Who would you believe the inter Endo and his cronies or the Nuclear Medicine Doctor and his whole body Scan?

Honestly these people have destroyed my health and threw me away as trash by claiming I'm cured. I feel like they are trying to kill me as silly as this sounds but it makes me wonder when they do this shooting in the dark medical practice where I'm the one with the most to lose.

I'm certainly getting second opinion to John Hopkins Endocrinology Dept and just going to stay with them.

[rosyG]

hi looks as if recurrence is unlikely but I think you are wise to ask for further tests/ It is easy to biopsy the lymph nodes to see isothere is metastases

[Batty1 in reply to rosyG]

Did I miss read his amendment? I read it to mean it's unlikely residual thyroid tissue.

[rosyG in reply to Batty1]

I read it as that it's likely to be residual thyroid tissue as you didn't have the tissue ablated after total thyroidectomy Then he says it's very unlikely that the lymph nodes have been affected but can't be ruled out. So if you follow this up and get it checked it will be good but it sounds a good report, just with very small doubts

[Batty1 in reply to rosyG]

I understood him to say most likely is remaining thyroid tissue since I didn't have radiation , but unlikely. The lymph nodes concern me the most.

[rosyG in reply to Batty1]

Yes I think you are right but he seems to say it’s unlikely the lymph nodes will have become involved but he can’t rule it out. - so best to ask fir follow up testing just to be on safe side ?

[Batty1 in reply to rosyG]

I re-read the doctors amendment again and I believe you are correct on your first response. I will still seek out a 2nd opinion just because of the lymph nodes being in question sadly I just don't trust these people anymore to do the right thing after having to fight over 6 months to have and Ultrasound to check that nothing is growing again to this.

Anyway, thanks for your time appreciate it.

[Batty1]

Hi Lora7again

Did you have thyroidectomy for cancer or Hashimoto disease?

I guess Im not understanding the importance of these thyroglobin and thyroglobin antibodies in relation to thyroid cancer since I never had elevated thyroglobin anything when I was originally diagnoised with thyroid cancer 3 yrs ago.

[SilverAvocado]

My understanding of why the thyroglobulin are significant is that a person who has any kind of thyroid, be it completely healthy, attacked by Hashimotos or cancer or whatever, will be producing thyroglobulin all the time.

Once we've had our thyroid removed, particularly if it's then been ablated with RAI there should be no thyroid tissue at all in the body. Thyroid cancer cells are very similar to ordinary thyroid cells, so they also make thyroglobulin.

This means that after a TT and RAI, if any thyroglobulin is detected then it may by thyroid cancer cells making it. It's the same with thyroiglobulin antibody, I think. If there is no thyroglobulin there should be no thyroglobulin antibody.

If you didn't have RAI after your TT I think you will always have residual thyroid cells, surgery can't remove them all. This was one of the reasons I was persuaded to accept RAI, although I think it was probably a bit of a trick. I am pretty sure I had thyroid cells growing back even after my RAI because something showed up on the scan.

I've had detectable thyroglobulin and antibodies the whole time, too. I looked up to make sure I wasn't getting my terms confused, and it's only then I realised the goal is to have undetectable or negative numbers!

Both your reports sound like they are saying you dong have cancer. But I also think both are a little bit vague. They're kind of saying that with results lik yours there is a tiny chance you could have cancer, so for them that's enough to accept that you don't have it. I think in your position I might still want further reassurance, because doctors are arseholes.

[vocalEK in reply to SilverAvocado]

After all I've read on this board, I think of the doctors as "useful idiots."

[Batty1 in reply to vocalEK]

Very true!

[DebTex]

I agree with RosyG about getting the lymph nodes biopsied, I would do everything humanly possible to make sure that there is no cancer recurrence. I have a benign 7mm mucinous neoplasm cyst in my pancreas that was found during an ultrasound before my gallbladder removal 2 years ago. They biopsied it and it was found to be benign, I had a MRI on it the last 2 years and it started out 6mm this year it was 7mm, which is still very small, I am to do a MRI for the next 3 years to keep an eye on it with a Pancreatic Cancer Prevention Clinic where that is all they deal with. I try not to think about it but I know it’s there and pancreatic cancer has one of the worst prognosis. You have been through a lot and I hope that you can get a definite, positive answer about it all! Best of luck to you!