Hi Wendy,

My ex-husband had an oral cancer diagnosis overturned in favor of a diagnosis for a branchial cleft cyst. It may very well be that your ENT was right and the pathologist is wrong. My husband's ENT never felt the cancer diagnosis was correct. But, he was professionally obliged to accept the pathologist's diagnosis of squamous cell carcinoma and refer my ex-husband for treatment.

I cannot emphasize enough the importance of pursuing an independent second opinion from a comprehensive cancer center. When I say "independent" I mean independent from your medical care team.

You can have your medical records, which will include your biopsy slides, sent to wherever you choose to have them reviewed for a 2nd opinion. Your biopsy slides and any tissue samples preserved and retained is your personal property. You may do with them what you wish.

I arranged for the City of Hope (a highly ranked CCC in California) to give a second opinion on my ex-husband's cancer diagnosis. Our situation was peculiar. I had many reasons not to trust the pathologist who handled my ex-husband's diagnosis to refer us for another opinion.

There were four pathologists, which included the Director of Pathology, at City of Hope who agreed that it was a branchial cleft cyst instead of squamous cell carcinoma that caused the swelling in my ex-husband's neck. Please read my signature below to get an idea of what was our situation. It turned out that he was truly misdiagnosed with SCC. Unfortunately, he had begun radiation and chemotherapy, had unnecessary surgery to remove his tonsils and oral surgery to remove healthy teeth. It was a nightmare--and because of lasting side-effects, we're still caught up in this nightmare.

A doctor who is a pathology generalist and who is not keeping current on oral cancer diagnostics might read a biopsy incorrectly when it comes to branchial cleft cysts. BCC's contain squamous cells and both BCC's and SCC's can test positive for the presence of HPV. I believe that the pathologist who first evaluated my ex-husband's lymph node biopsy was not aware of those facts. And, as a result, he diagnosed the condition as being malignant instead of benign.

I believe that the pathologist at the hospital where the biopsy was conducted used a positive result from the p16 stain (tests for the presence of HPV) on which to base his diagnosis. But, a positive p16 is NOT diagnostic of cancer. It is true that HPV does cause oral cancer. But, it does not cause cancer in all of the people who have been exposed to it. You can find out if your biopsy samples were tested by looking at the pathology report. The pathology report will probably not contain the words "HPV Positive" anywhere on it. But, the results of the p16, if conducted, will be listed.

You have some very good reasons to remain skeptical about the accuracy of your cancer diagnosis.

Also, please be aware that PET scans are not always accurate. Do not allow any doctor to diagnose your cancer based soley on a scan of any sort. PETs are notorious for giving false positive readings. If a spot shows up on a scan, you will need a biopsy to confirm that it is malignant. Scans tell doctors where to look for cancer. They do not tell doctors that something is actually cancer. Scans are not a diagnostic tool. They are merely an aid in the process of obtaining a diagnosis. There is a mantra about it here on the OCF Forum, "It isn't cancer until the biopsy says it's cancer." And then, pathologists can be wrong (as in the situation with my ex-husband.)

I have posted a lot of information on this forum about branchial cleft cysts v. squamous cell carcinoma of the head and neck. I hope it is helpful to you. If you have any questions, please feel free to contact me.



Sandy