Newly Diagnosed - What Sort of Tests Would Be Done After a Positive Biopsy Result on a Tongue Lesion

Hello kiwiigal, you appear to have a lot happening at the moment. My prayers go out to you and your husband! The advice that was given to me was to have someone in the room with you when you meet your ENT... another person with a list of questions who can take notes throughout the appointment. Since the source of the cancer is your tongue, they will want a full-body PET scan first to check for any mets that might change the treatment recommendations. If surgery is recommended, I would try to find a ENT who has done lots of these very-specific types of procedures... vs someone who has done it only a few times (or less). So, I would definitely include a question for your ENT that informs how patients in your situation this doctor has treated? I would also line up a second opinion with a different ENT at a different facility to see if their treatment recommendations differ at all. In my case, I went to two places in two, different states.. and both doctors recommended the exact same surgery/chemo/rads treatment. If radiation is recommended, I would ask about the option of Proton therapy... and if any new studies show promising results using lower-dosage rads vs high-dose rads.

While I personally compiled a long list of questions prior to my initial consultation, it was all of the questions that arose after the appointment that were the most important. About two days after the appointment, I contacted my ENT and asked those specific questions over the phone. I have a feeling that happens with a lot of people... so, I would not worry about being too prepared before heading into the meeting.

Keep us updated as things happen. We can probably help you create a better questions list once more details are known.

yes, "mets" meaning metastasis. A whole-body PET scan will show if there are any other areas of concern that might impact treatment recommendations. Also, and very important... ask about a dental visit (dentist recommendation) to have your teeth/jaw bones assessed well in advance of any radiation treatment. My ENT didn't say anything about it.. however, my oncologist emphasized the importance of the dental visit. She even set me up with a dentist who works with a lot of head and neck cancer patients. Radiation to the jaw bones has life-long effects that some people deal with long after treatments are finished. Dealing with any potential teeth issues before radiation can prevent a lot of headaches that might happen years from now. Hopefully your teeth/jawbones are in good order... and nothing major needs to be done. The dental thing is only an issue IF there is going to be direct radiation to the jawbones. Also, you may have already seen this site.. but, a quick search popped up this: https://anzhncs.org/mdt/

I don't have any words of wisdom to offer you but wanted you to know that I am thinking about you and hoping that your cancer is in a stage where the minimum has to be done. I also had a white patch on the underside of my tongue in which a biopsy showed cancer. I had had a few biopsies done over the years and the diagnosis was inconclusive when it was benign but one ENT told me I had oral lichen planus. I asked the ENT to remove the entire white patch for my last biopsy because something was telling me that something wasn't right and they found a very small cancer, 1.5 mm wide and 0.6 mm in depth. It was caught so early that I only required surgery (a wide resection) of the area to be sure that I had clear cancer free margins. I had no radiation or chemo. They did do a neck CT scan to be certain there wasn't any evidence of lymph node involvement. It has been almost 5 years and I have had no recurrence. Please keep us posted as to how you are doing.

That sounds like very positive news that removing it is all that should be required. I know how anxiety-provoking this can be but it sounds like you caught this in time. Please do let us know how your scan results turn out. Good luck with everything.