Imunostaining. It's used as a HPV testing alternative.

Very bizarre you're the second HPV + oral tongue cancer patient this week. You are correct HPV + is good while poor differentiated isn't. Good luck on the pet!

This is interesting. The risk of HPV related oral cancer is so low that the NCCN guidelines doesn't even have HPV testing as a guideline, oropharyngeal does. Another is oral tongue cancer usually spreads literately, not to the posteurier, back. Oropharyngeal BOT cancer can move forward. There can be p16 over expression, without being HPV positive with this type of testing. Other factors have to be considered, like site, other indications for HPV.

Good luck with the PET/CT. Don't exercise two days before the test. A low carbohydrate diet 24hrs before test. No food, medicine after midnight. No chewing gum, brushing teeth, mouth rinse day of test. The PET is so sensitive it will show uptake from too much talking. No having lifting. Some say drink 16 ounces of water an hour before appointment, but mine always gives you more water before testing. They will test your glucose and if too high, the scan won't be done. After the 18-FDG injection, they have you relax. Mine was in a quiet, dimmed room, and give you a warm blanket, and cold can effect test. My last one in February, my facility, gives contrast for the CT part, but I can't have CT contrast due to my kidneys, so they had to speak with the doctor, and had my PET/CT was without contrast.

Thank you for the info. I was told to take my meds, as they are for anxiety, but nobody warned about exercise. Will take it easy today in prep.

Kristen

HI Kristen,

Welcome to the forum and sorry you had to join us.

I'm also a mum of two (4yr boy and 6yr girl) and am 39 years old and am just 2 weeks out of surgery (BOT and ND) and have chemo/radiation starting in about 2 weeks - I sympathise with you but a saying that's helped me is "It is what it is"...

We can't change it, we can just deal with it and make the best of the hand we've been dealt. This group is fantastic and have already helped me so much in the short time I've been a member so come back here often. We understand what you're going through and can offer advice and/or comparisons when needed.

Thinking of you and keep us posted.

Kindest regards,
Melissa.

Hi, Kristen.

I, too, am a young person, without risk factors (not even HPV +) and had 2 totally different types of oral cancers. One on the oral tongue and one in the tonsil.

Take a look at my signature for more details.

All I can say is that I am much like you with the anxiety disorder at baseline, so I didn't take too well to getting these diagnoses and facing surgeries/treatment.

The most important thing to do now is to get under the care of an expert medical team that specializes in head and neck cancer. In a few posts above "fishmanpa" gave you a link to the rankings of the hospitals. There is also a list of CCCs (cancer centers) so you can find one that is good near your home. Even if you have to travel a bit or stay with family/friends closer to the hospital, it could make all the difference in the world with a good medical team.

I know how you must feel, being a younger mother with a husband and kids. I was pregnant with my second child when I was diagnosed the first time. I was terrified, but all turned out well and I have a beautiful baby boy in addition to a 4-year-old daughter. I'm not going to say this is easy, especially with little ones. Rally your friends and family quickly and tell them exactly what you need and when you need it. There are websites that can be used to organize rides, cooking, cleaning, childcare, etc. with all of those who are will and able to help. I used www.helpinghands.org. It was very helpful to me. If you need help with that, I can help you.

Please feel free to contact me through the forums or private message me (PM).

Best of luck,
Kerri

Thanks, Kerri! Before they knew it was a panic disorder back in 2000/2001, they kept asking if I was pregnant (the nausea) and running tests. By the time they did an upper scope to check stomach issues, they had stopped pestering me about pregnancy. . . except then I was, and we did not know. That baby is now 11, and seems fine. Luckily his current Scout merit badge work is Cooking, and he is enjoying being helpful. As soon as I know what will happen when, I will turn my Sunday School ladies loose. I may lose taste, but at least my family will eat well!

I posted my frustration with the docs arguing clear margins over in the diagnosis forum, as my best guess for where it belonged.

Very very glad this forum exists.

Kristen

Hi Kristen, I too am a young person who was diagnosed with SCC of the oral tongue. It also took my docs several months to diagnose me bc I had no risk factors. Just wanted to let you know I remember feeling like you are now. I am now two years post surgery and currently NED. You can make it through this!