Warren, welcome. It sounds as though you have a great attitude and are going about this unexpected turn of events smartly and efficiently. Strange words to use for that reeling over the abyss feeling you're having right now, I'm sure!

As Brian wrote, HPV+ cancers have a better outcome and yours certainly seems to be so.

You've gotten some marvelous advice from the previous posters. We're all here for you, all the time.

Please keep us posted every step of the way and ask any and all questions that come up, no matter how trivial they may seem to you.

You're showing a lot of courage and determination already. I'm confident that as tough as things will become, you'll get through it!

Hi Warren,

I completely understand the fear and uncertainty you and your wife are feeling. Our daughter was 6 months old when Ken was diagnosed. We were fortunate to have lots of family and friends around to help. I hope you are able to rely on others a little as well. Please let your wife know that she can contact me if she has any questions or just needs to vent. Being a caregiver can sometimes be more difficult than being the patient. I used this site a lot to vent and to listen to other's stories to realize I could get through it. Your baby will help you get through each day as well. I swear our daughter gets us through the dark times with her smile.

Our thoughts are with you.

Jill

As others have done, I would recommend a second opinion from a top-ranked cancer center -- I gather you're in northern Virginia (based on the referral to Lake Manassas), so you're not far from either Johns Hopkins (where my husband was seen, as was RPCV -- and in the most recent US News rankings it's rated #1 for ENT and #4 for cancer) or Georgetown, where Charm2017 was treated. If you are closer to central Virginia, there's the UVa Cancer Center in Charlottesville or Massey Cancer Center at VCU in Richmond.

All of these are National Cancer Institute-designated centers (meaning they are at the cutting edge of cancer research). Hopkins is also a member of the National Comprehensive Cancer Network, an alliance of 21 leading centers across the U.S. that together develop the annual treatment protocols that represent the state of the art in fighting this disease.

Whether you choose to be treated locally (at Lake Manassas or similar) or at a center like those listed above, it's important to at least get a second opinion from a facility that sees a LOT of this kind of cancer. Assuming the second institution agrees in the diagnosis, that second opinion may concur with what you are hearing from the local docs, or you may receive a different treatment plan. (Davidcpa, for instance, got five opinions -- and five different plans -- before choosing the one from a top-ranked cancer center.) Because this cancer can impact so many functions (speaking, eating, breathing, and so on), you want to make sure to get advice from people who have treated this many, many times.

I'm reminded of a post from early last year by a then-new caregiver whose husband had been diagnosed with cancer by an ENT in New York City. She received much encouragement to get her husband a second opinion from Memorial Sloan-Kettering and wrote this after making an appointment there:

[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote]

Warren,

Welcome to OCF my friend, glad you found us, sorry you had to. Like you I was in my early 30s when I was diagnosed and had a young family, I remember the nights worrying not about myself but what my ordeal would do to my wife and boys.

What I would say is just take it as it comes and don't let the word cancer overwhelm you...its not an automatic death sentence, if caught early your odds are good. Unlike you I did not find these forums until well after tx so had to walk this road.blindly...the advice and support here will make the road easier.

Good luck, keep your chin up

Eric

Welcome to the forum, Warren. I am so glad that you found this place. It is a wonderful source of knowledge and support.

Congratulations on your new baby! My daughter was 3 months old when I was diagnosed and while it has been a difficult road at times, she is a constant source of strength for me. She makes me laugh when no one else can and gives me a reason to get up and moving each day whether I feel like it or not. It's really hard to find time to feel sorry for yourself when you have a little one demanding your constant attention.

I really want to reiterate what others have said about getting a second opinion at a comprehensive cancer center. I originally saw a private practice ENT who was confident that he could treat my cancer. He did my first surgery and then at the urging of members here, I transferred to a CCC. At the cancer center they redid my pathology and found that the original report was incorrect (they said I had perineural invasion, but I did not) and that the margins from my first surgery were not sufficient. I had a second surgery and will now be having radiation due to two positive lymph nodes. I am so grateful that people here urged me to get that second opinion because otherwise I would not have been getting the proper treatment.

Best of luck to you and your little family!

Emotionally tough weekend. There's no good way to learn that you have cancer, but finding out about it at 4:30 on a friday afternoon before a long holiday weekend leaves you with a lot of time to wonder. I'll be glad to get the first scan done to find out for sure if this has spread.

I think I'm going to take the advice of folks on here, and go to the Lombardi/Georgetown CCC. We have family just a few miles from there, so my wife could probably bring our little Maltese, and our baby boy, to camp out with family while I get treated.

It's been a long time since I felt heartache like this. My emotions keep swinging between positive and gloomy. On the plus side, this is making me appreciate my wife, Mary, even more by the minute. I look at our little boy Austin a little differently too. When things get tough, I'll remember them as the reason to fight hard.

Thank you all for your support. It helps.

Sounds like you are moving in the right direction, Warren, and taking positive steps towards a successful recovery. The waiting to find out stuff is one of the most difficult part of treatment but try not to let the "gloomies" intrude too much on the positive side of things. When they do, just give them a very short time limit and then get back to all the reasons why you will be successful. Think of all the pluses - and you have many! The best part is that you have a wonderful family to support you and get thru this. Your little boy, Austin is at the age where he will be delighting you daily with his progress and discoveries of the world around him. I'm sure your little Maltese will be doing his part, too in bringing you some smiles to enjoy. Stay close and let us know how you are doing.

Warren,

The Nietzche quote in my signature...my "why" is my family and in the darkest of times my wife was there holding my hand and singing to me. My boys loved on me. Now my 11 year old tells me I'm his hero because I beat cancer and never quit. It's a powerful thing, keep a hold of that brother and it will see you through.

Eric

Warren try not to worry. You have support and strength on your side! I know how you feel about having to wait - I was diagnosed 5 days before Christmas!!! When most people-are away!! Hospitals slow to a crawl etc. Even my ent guy went away until jan 4th - and wanted me to wait!!!! For my biopsy results until he came back ( my biopsy was dec10. Obviously I wasn't willing to wait a month so I had my Gp give me h results on hwhen the came in- on the 20th - he was so upset he arranged a head and neck & chest ct for the next day - and I got the results that afternoon!!! And by the next day. I Had an appointment with an MRI and a top notch specialist at our local ccc. I had my MRI the 6th of January - (two days after I would have been getting the news from my ent guy! ) and surgery within the month.

I know it's a shock but you can get through this. take care and good luck with your scans

Hello. I just read your posting and I'm also a cancer patient. Base of the tongue (no tonsils) and one lymph gland. I've been writing a blog about my experience as I went through my treatment. It's been no picnic and I'm still in the middle of recovery. Feel free to contact me with any questions.