My medical team made me aware of the process by which they determine their recommendations. One of the most critical steps was a review by the cancer board. After all my tests (biopsy, scans, etc) were completed, all that information and my main doctors (Head and Neck, Oncologist, etc) met with the cancer board. In my case, this board met on Mondays. They would review my case (and others) and come up with agreement on staging, prognosis, and my recommended treatment.

Agree that for tongue cancer, surgery appears to be the first step for most everyone following traditional western medicine approach.

Getting the scans now rather than later could be key. In my situation, I knew I had something going on, my first dentist said "let's keep an eye on that" and I switched jobs and was lazy about getting a new dentist. If I had followed up quicker my process would have been much easier, better prognosis, etc.

As far as how did I navigate it, I told my cancer coordinator (not a doctor but an administrator) that this was my top priority and call me 24-7 if a spot opens up for any of these tests, appts, etc. I will leave whatever I am doing and come immediately if needed. From positive biopsy result to surgery was about 2-3 weeks. I think fairly impressive considering all the steps I went through (4-5 scans, 4-5 doctor's appts, cancer board, etc).

I am on my way to the surgery appointment. Check in is at 9 am Pacific and the procedure is supposed to last a little more than an hour starting at 11. I will post an update most likely tomorrow. Please send prayers this way !

You are not alone we are with you on this journey.

The surgery was completed yesterday. I was very relieved when I spoke with the surgeon. He had me sign an informed consent and the name of the procedure has been changed to removal of malignancy from right central tongue. He said that he anticipated very little was going to be removed. He even commented that this would most likely be the smallest or one of the smallest cancers he sees all year. I know that I need to be grateful for the very early diagnosis that I have been blessed with. I just think that somehow I can not accept that I have been this lucky to have caught this so early. It is almost like I feel that how can I be so lucky when I have read what so many others have had to endure.

I was out under general anesthesia. I was very scared because the anesthesiologist said that they would need to intubate me. That was concerning. And of course I was afraid of general anesthesia. I am sure that this is my control freak personality. I know that I need to work on this control freak nature if I am going to successfully get through this.

The surgery was completed with the following report about margins according to the pathologist:

Right lateral margin tongue negative for dysplasia or malignancy.

Tongue medial margin negative for dysplasia or malignancy.

Tongue deep margin negative for dysphasia or malignancy.

Those are the only three margins that are reported. Is this all of the margins ?

The surgeon notes are:

“The index tumor was identified on the central aspect of the right tongue. Using needle tip electrocauterization a partial glossectomy was conducted into the intrinsic muscles of the tongue. The ventral lingual vein was cauterized with bipolar cautery. The periphery and deep basin of the defect was reexcised for margins control under frozen sections analysis. All margins were negative “

According to the surgeon there is going to be another pathology report in a few days that will determine the stage of the cancer. At least that is what I think will happen. Does it sound like I got this correct ?

Thank you all for your input and support.

Glad to hear you came through the surgery well and the reports sound good. Yes, it took 3-4 days (or more sometimes) to get the final report on the tumor. It has to go to a lab for a more detailed analysis. How are you feeling? Eating? Drinking fluids? Home?

Thank you for asking. I am home. Eating is still difficult. I get food stuck in the bottom of my mouth and I have to be very careful to keep it clean. I am able to swallow fluids so I am going to concentrate on eating non chunky soups for a while. My tongue is pretty swollen still. The pain is tolerable and I do not need any narcotic pain pills thankfully. Tylenol works fine.

I am on a medrol dose pack to reduce swelling. The swelling is decreased today so I am optimistic.

The final pathology report came in a short time ago. The histologies grade of the tumor is G1. It is 4 mm by 4 mm. The depth is 1 mm. The tumor focality is unifocal and the pT category is pT1. I am hoping this is good news ?

I can’t help you with tumour grading but I Vividly remember sitting for one whole hour to eat a bowl of soup. What you describe with eating sounds pretty normal - just be rest assured that WHEN YOU KEEP AT IT - it WILL get better. Key here is you absolutely must keep eating. Even when everything tastes like metal!

Keep going - you are doing great.

Awesome pathology report. Now just concentrate on recovery.

I must say-you are brave. To this day I have never read never mind owned a copy of a pathologist report. I would have had a magnifying glass checking out how the computer printed things and trying to determine if that deviation meant anything.

Some people are better off not owning these documents - and I am one!

Get well soon.

Glad to hear you are home, relatively comfortable (tylenol only), and eating. As Pandora advised, keep eating. Find anything that you can process and go for it. It does take awhile to learn how to use your tongue again. I used a blender for weeks to get some of the solid foods back into my diet.

Regarding the pathology report, I am not knowledgeable on that. I suggest you get in touch with your doctor(s) and go over that in the next day or so. Just want to make sure it is all good news.

All in all, things are sound good. Wonderful! Keep up the recovery.

Edit : Just saw that you went through your surgery already. Glad to see that everything worked out well! Take the eating slowly. Took me 4-5 days before I could eat anything semi solid after my partial glossectomy and even then it had to be small bits. Make sure you are taking in enough nutrients as well. If you can't eat balanced nutrition meals for an extended time make sure you get some Boost or Ensure shakes to supplement your vitamins that your body needs or you will get pretty light headed and weak. I made the mistake of trying to live off of pudding and jello for 4 days and ended up having to get some shakes because I had zero energy by day 3. Best of luck in your recovery!