Hello everyone... Just got diagnosed two days ago from CT. I am so scared!!! - will be telling my wife tomorrow. Have three kids - two in college (girls) one boy in 9-grade (really good hockey player). I can't stop crying (which is making my throat hurt more...) Going to the Board Cert ENT on Monday (Feb 3rd). So here is what the CT scan says: There is a 3.9 x 3.2 x 4.5 cm mass arising from the lateral oropharyngeal wall or the base of the tongue on the right side. The mass abuts the epiglottis and the right aryepiglottis fold. Preepiglottic fat planes are preserved. There may be extension into the tongue base best seen images 60 thru 62 of series 3. There is metastatic level 2 lymphadenopathy on the right best seen on image 56. There is a questionable metastatic level 5 lymph node in between the right sternocleidomastoid muscle and the right internal jugular vein which is best seen on image 76 of the series 3. There is a metastatic level 3 lymph node on the left best seen on image 68 of series 3 and there likely metastatic level 2 lymph nodes on the left. There is evidence of right true vocal cord paralysis. There are no pulmonary nodules. There is emphysema. (I never smoked). There are no bony lytic or osteoblastic lesions. HELP! I feel lost and failure. Anyone? Please. I appreciate all of you and your wisdom, suggestions, thoughts. I guess this would be considered stage 3, maybe???

Hi Fred—I know it’s hard not to panic, but please let your medical team help you understand specifically what’s going on. And please don’t wait to tell your wife and kids because they will want to support you on your journey and you will need them.
My husband was diagnosed with HPV mediated squamous cell cancer located at base of tongue with 3 lymph nodes involved. Diagnosis was received middle of May 2019 and he started radiation (35 sessions) and 7 chemo, finishing treatment on Aug 12. Just before Thanksgiving, he had a clean PET scan. It was a tough go of it, but he made it thru. He will be followed up for the next 4 years by his ENT and the radiation oncologist. We were told there’s a 90% cure rate for his type of oral cancer.

You’re going to be ok. Put yourself in the wonderful caring clinical teams and check in often with this group-they are a Godsend and a wealth of information.

Keep in touch!!

Nedra

Hi, Fred. I am so sorry you are going through this. My husband was diagnosed with SCC BOT last February and it has definitely been a challenge. While I can’t totally understand what you’re feeling, I can tell you as a wife, it’s terrifying too. Glad you’re going to tell your wife. She will want to help you navigate this whole thing and share the burden with you. As far as your kids go, that’s up to you. We did pick and choose how much to tell the kids not realizing they would all start to search the internet which scared them to death! Now we just tell them everything. Bob opted for surgery, chemo and radiation to give him the best shot and it was very hard but it is manageable. Whatever treatment you choose, the doctors are great at anticipating side effects, complications, etc. I don’t have any real advice for you (i’lllet the real veterans on here give you that) but I wanted to let you know that I’ll be thinking of you and wishing you the best! Just breathe and take one step at a time!

Fred: Oral cancer hits a very small percent of hte population so it is important to be treated by a Head and Neck cancer specialist. if I were you i'd seek out a CCC. If it's too far from where you live, you can find a local place to do follow up, but be usre that the main decision maker has extensinve Head and Neck cancer experience,