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.

Hi and welcome. It's great that you have sought support and information. This is a terrifying time for you, your husband, and loved ones. I'm sorry this is happening to you at all. If the biopsy comes back positive, ChristineB can give you a link to all of the CCCs in the country (hospitals that specialize in CA treatment). HOPEFULLY, YOU WON'T HAVE TO DO ALL OF THIS, BUT JUST IN CASE...

Get all of your ducks in a row with medical records, test results, slides from pathology, etc. and get to a CCC. Don't mess around. You'll need an appointment immediately for a consult with a specialist. My surgical oncologist is an otolaryngologist (ENT) who is a head and neck cancer specialist. Once you consult with said specialist, a whole multidisciplinary team will get the ball rolling with a treatment plan. This is what they do...and they are good at it. Your head will spin, but they will hold your hand each step of the way. Get yourself a big 5-subject notebook and make it your cancer bible. Take it with you to every appointment, have it handy for every phone call, and write down every question/concern you have as soon as you can. Otherwise, all of the information will overwhelm you and you will have a hard time remembering. I used the divided sections to separate the different specialties and put tabs in each section. It might be a little much for some, but for me, it was the only thing that made me feel like I had any control over what was happening.

The last thing I want to do is overwhelm you. Like I said, hopefully I'm typing this all out for nothing. When I was suspicious that I had OC and was waiting for an appointment with an oral surgeon for a biopsy, I found the OCF website. I started to read through it and I was terrified! I actually didn't return and join these forums until I was four months post op and had a scare with an enlarged lymph node. I ended up being fine, thankfully, but I am so glad that I came back when I was ready. The people here are your lifeline when you are dealing with OC. There are so many caregivers on these forums. Sometimes, I have trouble remembering who is a patient and who is a CG! We are all here for you, for any reason. Another good thing is that there are many folks here from Australia and the UK...different time zones, so you may find someone contact in the wee hours of the night when you can't sleep and might be worried.

Please keep us posted. Best of luck in the coming times.

With great care,
Kerri

TO everyone, thank you so much, you have all given me hope... I was definitely panicking but your words have helped so much! To clarify, the doctor who had never seen it before is NOT the one treating. He referred us to someone else, who is a specialist in this.And yes, after all the various tests he is doing this week, next will be biopsy, next week most likely. Which will tell them definitely. Sorry I wasn't very clear before.


Cheryl, CCC is a cancer care center? and OC...by that you mean oral cancer?

Maria and Kathy, it is so great to see other caregivers here. I know I will have many questions for you.

DavidcPA, i noted the mention of Moffitt in Tampa: the specialist treating my husband did his fellowship there.

you are all terrific. thank you so much for the support and kind words and good thoughts!!

Yes, OC = oral cancer.

CCC is short for "comprehensive cancer center" -- meaning a facility where specialists from a variety of areas (surgeons, chemo docs, radiation docs, etc.) meet as a multidisciplinary team and jointly decide on a treatment plan for each case -- a "comprehensive" approach, as it were. CCCs see a large volume of cases and specialize in cancer, while your local ENT may see only one or two OCs a year (if that) and also takes out tonsils, puts in ear tubes and does nose jobs, among other things.

You'll see references on these boards to NCI-designated comprehensive cancer centers and cancer centers. In this context, the differences between CCC and CC have to do solely with research interests (broader in the case of NCI-designated CCCs), and both do take a multidisciplinary approach to patient care. Institutions apply to the National Cancer Institute for the right to be called "NCI-designated" -- it is a lengthy process that involves a lot of paperwork. About 20 leading US cancer centers are also members of the National Comprehensive Cancer Network; together they devise the treatment protocols that are updated annually and used by hospitals across the country.

You'll find a list of commonly used abbreviations (and their explanations) here. Be sure to check out the main Oral Cancer Foundation site, which has a wealth of information. And remember, there are no stupid questions on these boards, so ask away!

Great info, Leslie! You summed it up very well. You should save that and post it to others should they need the info...unless you've already done so .

I've been known to recycle my earlier posts.

thanks, all good info

we have a biopsy date - feb 16. Then I will know more about what we are facing.

thanks to all of you

That's a long time for a biopsy date... By the time you get your results it could be march... try to push and see if you can get something earlier! Good luck!

I agree with Cheryl on that one. You shouldn't have to wait that long for a biopsy. They should be able to squeeze you in. It could take 7-10 days for the results. If it turns out to be OC, every week is precious time. Best of luck!

I was thinking the same thing. Not really acceptable considering the circumstances. I will tell you that Kevin procrastinated for about 6 weeks longer than he should have because he thought I was overreacting. By the time he had his biopsy it had metastacized to many lymph nodes.
Please try to be seen earlier. The office should understand. No matter how much our men want to believe it's all wrong and not happening, you won't know until you know!! I don't know if your husband is in denial like Kevin was. It's hard for them, but I wish I had pushed way harder than I did.
I even cornered his Dr (gp)when she told him he could go back to work in Alaska for 3 weeks. We were alone and I told her she was making a huge mistake. I said if you check symptoms of oral cancer, he has ALL of them. I know she was afraid because she just froze and had an o crap look on her face. After the diagnosis and starting chemo I had to take my mom in to see her. She hugged me, cried and apologized. I asked her to please be more diligent with the next person that might come along. She said she would. It was because Kevin didn't smoke or drink so she just didn't think it could be cancer. I explained the HPV thing and a lightbulb came on. Hopefully next time she will be on it.
Part of our deal in the caregiving is to push when we need to. It's hard, believe me I know.
Keep in touch. We're here for you.
Kathy