Hi David &Philly- Welcome here. I am so sorry to hear of the recent diagnosis. i am 35 and was diagnosed at 33. March 2007 with tongue cancer. I had a full glossectomy. There aren't as many people in the younger demographic who get this so I just want you to know I am here for you.

I know you are probably in shock and very frightened. If I can help in any way with questions or just as a person to vent to please let me know.

Just gather as much information as you can and stay positive.

Thinking of you.

KATE

Dear Philly and David,

Rita and I have had similar surgery to the one you are most likely facing. Please know that we both will be right here to answer any questions you may have. You might want to start by doing a search for our posts in the archives.

My case was much like yours...ignored and mis-diagnosed for about the same length of time. One of my goals now is to spread awareness for both the public, so that they will know not to allow their practitioners to wait so long when something doesn't heal, and for dental and medical practioners to be better informed about oral cancer. Mine didn't even recognize it when it had spread and was classic.

I have lost 6 teeth and the bone on the upper right, along with about a third of my hard palate. I still have my own four incisors and all my other teeth. I did not have to have radiation, which was a blessing, and I now wear an appliance called an obturator, which fills the opening left by the surgery and provides some fake teeth for cosmetic purposes, and I do quite well. There is nothing I can't eat, and I talk and sing just fine.

Feel free to ask anything at all. I was so terrified and alone at the time of my surgery that I never want anyone else to feel that way!! Philly, you might have some questions as the caregiver.

Take it one day at a time. And if you wish to email me or PM me, feel free. Just go to my profile.

XO--Colleen

Update:

The test results showed a spot in the chest cavity. We're waiting for the Dr's office to call with either a referral to a specialist for biopsy OR to let us know that it's not a cause for concern. Talk about pins and needles!

The surgery is scheduled for Jan 8th to remove the remaining caner. The Dr. said it would be a very difficult surgery and very painful. He told David the same thing everyone said on here - to eat as much as possible right now, because it's going to be extremely difficult / painful after surgery.

Now, he said post treatment the survival rate is 5 years. That is extremely hard to hear... 5 years??? Surely that's the low end?? If anyone could speak to the accuracy of those numbers - I would really appreciate it.

So that's it for now - just waiting to hear whether or not we're going to see another specialist for biopsy / treatment in tandem with the ENT OR if we're to stick with just the ENT, surgery and Radiation (hoping & praying the spot in his chest is just a shadow or something...)

Waiting with fingers crossed (and toes and eyes) that the chest cavity spot is just that - a spot. They found a spot on my chest x ray 5 years ago and they vigorously monitored it for a couple of years, but no change. They said it could have been from bronchitis or some other issue. Lets pray Davids is the same as mine. (Totally freaked me out when they first told me tho!)

I hope you two are able to feel confident that you have your team on the move, and can relax and take a vacation from cancer over the holiday season.

We look forward to hearing more as you find out.

Donna

at five years they usually stop monitoring and recording survival stats so don't let that number scare you. it is simply that, a number. as that commercial says there is no expiry date stamped on your foot, so we enjoy each moment we are given, knowing we are not promised even another day ... but we set our mind to living long lives and set out to do just that. NEVER accept a checkout time from anyone other than your maker... because frankly none of us know how long we have with or without a diagnosis.

For instance a friend of mine was told he would not make it another year ... they figured 6 months max ... that was 2+ years ago and his reports are more positive than they have been for ages ...

Waiting is never easy but do know we are here wishing the very best for you.

They also found a nodule on my lung. I get it checked every 6 months and my pulminary doc is not worried AT ALL. He said almost everyone has lung nodules but you would never know unless you have reason for a chest ct or chest x-ray. Try not to worrry, but I you will...I sure did!! I'll be thinking about. And I will also keep fingers, eyes and toes crossed.

Keep us posted

Update:

It's no cause for concern! (woo hoo). We're going to take the awesome advice here and take a vacation from cancer and enjoy the holidays! The kids have their last day of school today - and now the focus is the Holidays.

Thank you all again so much, and I'll post again after surgery.

I hope you all have a WONDERFUL Christmas and New Year.

Philly

Three suggestions based on what I learned the hard way (BTW I was born in Philadelphia and still miss the cheese steaks)
1. Make your husband's favorite foods for this holiday period: suspend dietary restrictions and splurge as if he needs radiation, his taste will never be the same (some recover very well but it's always a "new normal" )
2. Make a preprinted list up now of little chores and very specific errands to respond to friends and neighbors who ask "how can I help?: or "let me know". We did not and by the time we really needed someone to rake the leaves, do a shopping trip, wash the windows, make a meal, etc, my wife and I were overwhelmed and did not want to "harass" people. Others in my waiting room had made a list and given it out on the spot, saying: "pick one and let me know thanks" and both they and the givers were happy. Some cancer web sites have a preprinted list
3. Make this a Christmas and New Year to remember for you and you Husband and family in terms of showing, telling and giving LOVE. And don't give up on FAITH and HOPE. Be prepared for the worst, but expect the best

So sorry you had to join our little club. Looking forward to seeing you post a year or so from now about surviving and thriving.

Philly, Please do not dwell on those numbers! I do not know why doctors spout numbers as though they know.....Tell him 99.998% of doctors do not survive past 136 years.

Merry Christmas to you and David!

Mark, I sure like that statement to the Drs. I'm still laughing at that one. Have a great day.