Hi everyone, my husband was diagnosed with base of tongue tumor with Mets to 1 lymph node 2 weeks ago. The past 2 weeks have been a whirlwind of appointments and tests. Had CT and MRI, labs and dental consult done, scoped x3 by 3 doctors, MRI, fine needle biopsy confirmed squamous cell. PET scan scheduled in 2 days. Tumor on tongue is about 1.3cm with lingual tonsil involvement but not past midline. Doctors told hubby that they think they caught it early and most likely HPV, although have not gotten results from smear, will get them on monday.
Hubby had biopsy of tumor scheduled for this Thursday but his doctor called and told him the tumor board met and all agreed that he was a good surgical candidate and they scheduled surgery thi Thursday for TORS with excision of lymph node(s). He is 56yo with absolutely no other medical conditions. No meds, no heart disease but did smokefor 20years, quit 17yrs ago.
I’m really nervous. They are convinced that it’s HPV based on soft fluffy appearance, location, soft movable enlarged lymph node. I keep reading that radiation is usually best approach.
We meet with surgeon Monday to over MRI and smear for HPV results and risks of surgery so hope to get clear answers about reason she feels surgery is way to go and if thinks radiation will be necessary.
Being treated at Hopkins and his surgeon is supposed to be one of the best in field so should feel confident but so much to take in in such a short period of time.
Really no question but anyone with similar experience further along with feedback appreciated

Welcome to OCF, Judy! You have found a great resource to help you and your husband thru whatever you are facing with oral cancer (OC). We will do our best to assist you with correct, up to date medical info from those who have been thru it and moral support. Read thru posts and also on the main OCF site to learn more about OC, treatments, side effects, etc. Learning about OC will help you to be a strong advocate for your husband. Ive included a link to a great section of our main OCF site that will tell you anything and everything relating to OC in easy to understand language.

When being treated at a comprehensive cancer center (CCC), your husband will be treated using a team based approach. That means all the specialists meet together (patient and caregiver are allowed to attend) creating the treatment plan so everyone is on the same page. The best place for anyone facing cancer in the US would be at a CCC where they attract the best and brightest doctors and have the best survival rates.

Intake will become a issue with whatever treatment plan your husband is given when he meets with his doc tomorrow. It would be a good plan for your husband to start having all his favorite foods, desserts too. He does not want to go into this with any food cravings so eating them now should help. Changes in the patients ability to eat is usually only a temporary nuisance but its definitely no fun going thru it. If your husband needs radiation with or without chemo I will go into much more about patients intake.

Best wishes with everything you both have going on! I know its not easy and it sounds like your husband has done so much in such a short time. As a caregiver, you will have alot on your shoulders. Never forget we are here for both of you. Theres many caregivers here who have been thru this and understand all the ups and downs. Good luck!!!

Main OCF site... Understanding Oral Cancer

I’m sressed out! STILL waiting on HPV, OVER 1 week now. Surgery for removal of lymph nodes scheduled this Thursday. Surgeon (supposed to be best at John Hopkins for BOT cancer says if not back then will wait and schedule second surgery or just proceed with radiation. Staying positive for my hubby but I’m freaking out inside. Just feel like the whole tumor board is so sure it’s HPV that they are taking it for granted that there is a small chance it’s not which could force a second surgery, am I wrong to be so freaked out? How long does it normally take others?

Most test results take about a week to get back. But there are all kinds of things beyond the doctors control that can make it take longer. Tests are sometimes sent out to other places to get processed which can make them take longer too. Hoping you get them soon!!!

My husband had base of tongue SCC that was HPV positive. He did not have surgery even though there was lymph node involvement. For cancer in the oropharynx which includes the base of tongue, patients don’t often get surgery because the area is hard to reach. My husband only had radiation and Cisplatin. Hang in there, you’ll soon get your answer.

caregiver of a BOT stage 4a with lots of lymph node involvement.

we have learned some doctors do surgery but others start with radiation and chemo. we were told by the ENT that surgery was a last ditch attempt. just the belief system around here.

my husband is several months out of treatment, eating whatever he wants and is getting feeding tube removed Thursday though he is supposed to have another PET scan in 5 weeks. He says they just want more money so I"m not sure if he is following up or not. He's pretty arrogant about all of this so I guess we will see.

Some of the tests have taken more than a week to hear back about, others within a day ro so. no realy rhyme or reason other than holidays and weekends seemed to slow down hearing results most times.