Hi everyone, I’m new to this forum so please bear with 
I’m three weeks post surgery for AiCC with left side parotid gland tumour - superficial parotidectomy was performed 7 weeks after first ultrasound scan and fine needle biopsy. Diagnosis came as a shock as radio therapist thought I had a dental issue causing pain and lump behind my left ear.
original ultrasound recorded tumour size at 7mm which Dr said was tiny and a low grade slow growing type. MRI scan following week recordedtumour at 8mm! OK, fair enough,small difference. Thing is, when I went for my results two days ago, they said the tumour was in fact 12.5mm! Is that reasonable for a slow growing tumour over a four week period? They said it wasn’t unusual as they only had a scan to go by, but surely two scans wouldn’t get the size so wrong!
I’m now paranoid that my low grade AiCC has now become high grade and the docs aren’t telling me.
I am now going to start 6 weekly checkups instead of the three monthly they originally told me.
has anyone else had larger tumours than scans detected?
Ali
Hi Ali. I’m glad the surgeons have got all the cancer out.
I might suppose that the new tumour size is based on the histology they would have done on the margins of the cancer?
When the surgeon removes a piece of suspect tissue the whole excised part goes to the histopathologist to check.
If your clinicians suspected high grade malignancy you’d probably be getting adjuvant radiotherapy
I can’t explain why your check up interval is shorter unless it’s because the tumour was larger than the scans showed ( scans can’t pick up stray cells)
I would contact your cancer nurse or your consultant’s secretary and get them to find out what the situation is. Explain that you are very worried. I doubt very much that your team is deliberately hiding things from you.
At least it will put your mind at rest.
Best of luck and let us know how you get on.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
