My husband (37 yrs old) was diagnosed with SSC on Thursday. He's scheduled to see a specialist 3 hours away in Indianapolis on Tuesday.

It's an aggressive SSC that started out on the upper left part of his gum's and has deteriorated a lot of bone over the last ten months. David has been telling a dentist and an Oral Surgeon about the spot - and they have both prescribed him antibiotics thinking it was an infection from a recent extraction or food caught underneath the gums (?)....

Waiting to find out if it has metastasized is the hardest part for us right now. Next Tuesday feels like it might as well be 20 years from now - because for right now it seems like life is at a halt until we find out more.

Anyway - wanted to introduce myself (I'm Philly) and my husband is David.

Philly,

Welcome to the OCF forum, not that we want any new members. But it is a great place to ask questions, and also explore the website for other valuable information on OC and the treatments options.

The waiting part is very hard, and time does seem to stand still.

Do your research and make a list of questions for the doctor. It is hard to remember everything. Take notes, and ask the doctor if he would mind if you recorded the conversation. I've done both and it is amazing the things you don't remember from the the doctor appointment.

I wish you and your husband the best.

Philly, you have found a place where you can learn as well as come for support. I am sorry that you have to be here. Rest easy as you can in these next days and weeks. No matter how bad it seems you always have hope.

Philly & David: We are here for you, and boy do we know what that waiting time is like! If there is a heaven and a hell, waiting for test results and all the anxiety and fear that goes with it is Hell. Keep posting - there are lots of people here with tons of experience. We'll be thinking of you. In the meantime, try to keep busy and stay out of the future!!

Donna

Philly:

Welcome to OCF. There are so many people here that you can lean on to ask questions, get support or even just vent frustrations to.

I had a spot similar to your husband's. It was one of 2 spots that were both cancerous last year. Mine was the top left behind my last molar, to me it looked quite large. Mine was only Stage 1 for me, so hope that helps to ease your mind some.

Waiting for test results seems like its an eternity, try not to waste time worrying. It doesnt change the results and just makes you upset. I do understand its easier said than done, but it really doesnt help you or your husband. Thru this journey, there will be many tests and waiting for results. Try to stay busy it will help the time go by and make you feel better by being productive.

Best of luck next week. Take lots of notes and write down all the questions you have to ask the doctor. Feel free to ask questions here too, its amazing the info you can find from patients and their caregivers. There is also tons of info on the main pages of OCF.

Yes, that is how mine started as well... had a wisdom tooth pulled and it would not heal ... months of dentists, doctor, ENT, ER for cat scan, you name it ... finally back to oral surgeon and he debrided, which opened up sinuses, went in to close that back up and found the spot he biopsied ... and here we are today ... what a long ordeal... WHat I went thru lead me to always tell people If it doesn't seem right to you - keep asking and ya keep asking until you find someone who will take the time to figure out what is wrong. I knew in my gutt something dire was wrong ... but had no clue what.

Hang in there - soon you will find everything is going at such a hurried pace you will wish for a couple days breather waiting for results and first appointments is never easy and seems like an eternity but once in treatment it is pretty fast paced so hang in there and hang on, it is an intense ride.

I wish you peace, courage and hope. Get him built up now with good foods, supplements and vitamins (always let doctors know every single pill that goes into your mouth though) and see if he can't pack on about 10 extra pounds real quick this is one time gaining weight is a good thing, so you have some reserve for treatment, as it will rob you of some weight.

Get connected to your local folks for support now ... friends, family, coworkers, neighbors, church members, etc ... let them know what you are going thru and have them help you in areas you need it ... some just need support, some need help with rides to treatments, meal prep, house cleaning while in treatment mode when time and energy is zapped ... help with the kids or what have ya ... getting people lined up now to help will save you time later when you do not have extra and will keep you busy now while the wait is hard.

If you have kids, this is an excellent time to teach them what family is all about. When one is hurting we all chip in to help and go above and beyond what is asked of us ... children will learn these valuable lessons from our hard expereiences like this if we will let them and not shelter them from it 100%. I am all for sheltering some if they are young, but not fully as this IS life and we learn from life, and the lessons learned serve a great purpose in making us all we can be ... so let them be involved as much as is appropriate for their age without scaring them, but allowing them to play a vital role in the home, family and relationship with their father.

Okay, I have blabbed a lot there but had a lot I wanted to share... hope a little of it has helped.

Our prayers will be with you as you begin your journey. It is not easy but it is possible, so never ever give up.

Thank you all so much for your helpful advice and insight. We really appreciate it - and are grateful to know there is a place we can go to where others are going through the exact same thing and can provide such tremendous advice, support, and friendship.

Thanks again,

David & Philly

Good luck tomorrow !!!

As Rita said....EAT. Have your husband eat everything her can, of course go for the most nutritious foods. Dont worry about gaining any weight, he wont want to have any regrets about food. It will take alot of calories to fight cancer. I lost 65 pounds, glad I had extra to lose. Eat like crazy now, it could be a very long time once treatments start and finish before he will eat normally again.

Hi Philly,

Welcome!! I just found this site myself. I was diagnosed back in March 2007. The people here are wonderful. It has made me feel better already.

Some of my suggestions are make sure your husband eats now. If he has surgery he will be in pain. You can't even swallow your own spit. Buy Ensure, water ice and mac and cheese. Nothing that really breaks up, it's too hard to control the food. The good news? The meds always kept me in pretty good spirits...lol My fiancee was an awesome support to me. As long as he was with me I was ok...I'm sure you are that person for our husband. So even if you feel helpless don't...you are helping just by being there.

Good luck and keep us posted. Oh...always bring a good bood to appointments...these docs take away:)

Philly and David,

Welcome to OCF. I'm also 37 and my Docs did the same thing, gave me a swish and spit..."Oh, it's not cancer you don't fit the profile.." Well, ever since I found this site I found a lot of us don't fit the profile but sure as heck are in the same boat. I'm sorry, I don't like seeing people pushed aside or not diagnosed when they should be...My whole life it was drilled in my head that early diagnosis is key. I wish the best for you and your husband you came to a good place. You guys will get through this, stay on top of everything.