Can I have surgery with a negative scan? I was diagnosed with primary hyperparathyroidism last year, but no one can seem to find a parathyroid tumor. I have had two sestamibi scans, a CT, and ultrasound but they were all negative. My surgeon says he will not operate until something is seen on the scan. I am having bad bone pain and want to get this done. How can we find this parathyroid?
Imaging studies should not be used to determine when to operate. We diagnose parathyroid disease with labs, not with imaging, so we know that you have at least one diseased parathyroid gland. If the diagnosis is clear, then there is no reason to wait to have surgery, as long as you have an experienced surgeon who can evaluate all four parathyroid glands. If you have a surgeon who wants to see the tumor on a scan first, then you may be waiting for years. And unfortunately, scans are often wrong. Parathyroid tumors grow very slowly, and it is not uncommon for scans to be negative for years while the disease gets worse. Also, you can get a false positive from something like a thyroid nodule. And even if a scan does show a tumor, that does not rule out the possibility of a second tumor. Around 25% of people will have more than one diseased gland (with that number rising as you get older), and the scan may only show one tumor. If that tumor is removed, but the other glands are not evaluated, the patient won’t be cured. An experienced surgeon will not need imaging to find the parathyroid glands and will be able to see all four glands in most patients. This is the best way to ensure a cure.
Things are a little bit different for reoperations, in which case scar tissue from a prior operation will make the operation more challenging. But for a first time operation, there is no need to wait for a positive scan. I proceed with surgery when the diagnosis of primary hyperparathyroidism has been made, regardless of scan results.