Hi. My husband was diagnosed 2 days ago with probable HPV oropharyngeal cancer. Probable, ie the doctor is fairly sure it is cancer but needs the PET scan results to be sure and to see if it is metastised. He has a PET scan scheduled this week.

From what the first doctor said when he found it (I've never seen anything like that) to what the second doctor - that he sent us to the next day - said (It's big. I need a PET scan this week, and let's start setting up for biopsy/surgery asap) I am pretty sure it's going to be an advanced stage.

I am a nurse, but not an oncology nurse so I have a lot to learn. I am looking for support and information. Nice to meet you all.

Hi there - sorry you had to join our club but welcome and there are loads of HPV + cancers here. Most are tonsil or base of tongue and often this particular type of cancer is caught in late stages due to the location so try not to worry too much as it responds well to treatment. I'm surprised they've diagnosed it without a biopsy. Althought you said most likely - did he have reactive nodes? That's often where the cancer heads next and how it's discovered. The pet scan will tell you more but it cannot confirm cancer only a biopsy can as you probably know. A pet is like an MRI, or cat, it can show infections - inflammation etc... The best advice you can get here is - if it is confirmed to be cancer, go to a ccc - you will get the best treatment an drs who are familiar with oral cancer. Good luck... Fingers crossed its not OC - and ask questions - you work in the medical environment so you know a lot of the time you have to advocate for yourself, or have it done by a loved one. Tell your husband to eat up! Often even with a feeding tube - people lose weight during rads and chemo. I lost 22 - and I did well with he treatment by most standards.
Treatment is not fun but very doable.

Take care

Adding my welcome, and although this isn't a club that one joins voluntarily it's a great place to be and the members here are the best people in the world. There are also voluminous resources, so I suggest you go to the home page and explore.

I'll keep all my thoughts and good vibes headed your way. Cheryl's comments are excellent.

Hi, Atlanta
Glad the ball is rolling and that you don't have any major holidays to slow down the diagnosis, and possible treatment (we had Thanksgiving, Christmas and New Year's - yikes). This is a also a great place to vent - we've all been there one way or another. Please keep us updated.

Hi,
Also adding my welcome. We are about 3 months out of tx now so it is still very fresh for us.I am so sorry you have had to sign on here, but believe me, you will be glad you did. As the caretaker you will need support through this. We are here for you. Feel free to vent when you need to...and you will. You are in the scariest phase right now. Once you have the definites you can buckle down and get on with tx. Your lives will never be the same as we are finding out, but if indeed it is HPV as ours was, it is very curable. Stay positive, it is 90% of the battle. It really is. Be patient and know that we are here for you.
Stay in touch and feel free to private message any of us at any time. You don't have to post everything publicly.
Blessings,
Kathy

First off until a biopsy confirms his cancer and a HPV test is preformed then none of this is something any cancer center will treat. Let's wait and see what the bio results say and then the cells can be sent off for the HPV test.

Welcome to OCF. I agree with what Davidcpa said. First the biopsy then it can be tested for HPV. If the doc isnt familiar with what is going on with your husband, that should send up a HUGE red flag. Get someone who treats this type of cancer not someone who is not familiar with it. A major cancer center is the very best place to go for treatments instead of putting his fate in the hands of someone who never saw it before.

Good luck!

Welcome and I am sorry you and your husband are going through this. I feel your pain, as I just completed my treatment last week. What everyone is saying is true, the best thing you can do at this point is have your husband eat and then eat some more, he is going to need the extra weight. For me, once I started treatment eating was one of the last things I wanted to do. Thank goodness for my wife she made a daily menu and made sure I was eating. Please keep us posted on how is treatment is going, the folks on this forum have good ideas and valuable experiences they are willing to share. Ask and someone will answer it, finding OCF has been a blessing for me.

Same thing that Christine said about the "huge red flag" regarding the doctor not seeing it before. The PET scan will indicate distant disease, lymph nodes. I would not think that surgery would follow the biopsy. Usually HPV folks have radiation and chemo, but they can tell you that better than I can! Biopsy, like David said, then see if it is HPV, then go to a place where they see a lot of it, like MDA. It seems like there are always folks from Georgia in the ENT waiting room there with me.

Very treatable if HPV even if it is "big".
Best,
Anne

Welcome to OCF. I agree with what the others have said. Biopsy is the only definitive way to diagnose cancer. How any Dr. can say it is without a biopsy is beyond me. PET scans aren't even all that reliable. I have a false positive one year ago. Just wait and see what the biopsy says, and run to a CCC if it comes back positive. Keep us posted.