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Thyroidectomy, Papillary Cancer, Thyroglobulin is rising afterward
Hi All,
I'm currently 55, not working - no health insurance. My full procedure and all testing is handled overseas.
Had a full body MRI with Prenuvo (New York City) in 2022 which showed a small thyroid nodule, but the radiologist said probably not to worry.
Well, "probably"... I don't like that word. So while in Colombia with my wife, I had followed up with a thyroid ultrasound which came back mildly suspicious, and then with a biospsy which showed Bethesda level 5. March 2023, I had a full Thyroidectomy, including removal of 3 suspicious lymph nodes. Further biopsy on the removed thyroid confirmed papillary cancer. Here's the official writeup from the doctor:
In the basal region of the left thyroid lobe, a predominantly cystic mixed nodule with the presence of calcifications, heterogeneous, without halo, measuring 9.4 x 9 x 10.3 mm, presents abundant peripheral vascularization on color Doppler, histological study is suggested.
Total thyroidectomy + central neck dissection 03-19-2024 (LEFT THYRODEAL NODULE MACROSCOPITALLY INTRATHYRODEAL
No POP hypocalcemia
IONM ok
AP: CPTvC 0.7 cm left, MIE black, N 3/7 with met greater than 4 mm
April 2023: Followed up with 100mCi of Iodine 131
Followup testing (all done at the same lab):
7/21/24 - Thyroglobulin .01
1/21/25 - Thyroglobulin .09
5/21/25 - Thhroglobulin .14
Ok, so my Thyroglobulin is definitelly showing a pattern of increasing. My last appointment with the doctor (overseas), when the number jumped from .01 to .09, and the doctor was like "Don't worry... the number is too small to worry about. We can worry about it if I see a number like 1 or something.". I have my next appointment with thje doctor in a few weeks. Now that the number has jumped again to .14, I have a feeling he is going to say the same thing. My thought, is that if there is any possiblility the cancer is still there, I want to knock it out now and not give it a chance to grow or metastasize. (Note: this doctor is an endocrinologist - he also performed the surgery).
Since I'm not relying on health insurance to approve anything, I can probably push for almost scan or treatment I want.
Wait another 6 months and further establish a pattern?
PET scan with tracer?
Find an oncologist specialist?
NOT looking for medical advice - merely any options I may have missed so that I can discuss this intelligently with the doctor when I have my followup meeting. Thanks!
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I had a thyroidectomy for papillary cancer. Biopsy before surgery on 4.1 cm tumor was positive. Since surgery 18 days ago my endocrinologist ordered RAI treatment to "clean up" any residual thyroid cancer cells. My surgeon on the other hand sent my original pathology report to outside experts because of anomalies such as a BRAF E600V mutation, no lymph node involvement (really odd) etc, and declined not only to comment on what my diagnosis might be but cancelled the scheduled RAI treatment. The reason is that this is not a simple cancer to treat as many would have you believe. RAI and other preventative treatments can create serious problems, thus they must be used in a well informed and responsible fashion. Sometimes supervised watchful waiting can be the course of wisdom. Everything depends on the severity of the cancer. The expertise of the doctors is also paramount.
Wow! Your issue sounds like the exact same as what my 32yr old daughter has and is going through. She’s having surgery next month to remove cancer they missed after her Thyroidectomy. After her iodine scan they said no big issue but she went to Denver for an evaluation and suggested further surgery for cancer removal. Best of luck to you!