This is my first time posting. Although my concern for a recurrence is very real and ever-present, I have been cancer free for 8 years. I hope that helps the newly diagnosed. I have been reading many of your posts for over a year but decided that I wanted to get to know some of my fellow survivors. I've actually felt rather sneaky reading your heartfelt thoughts, fears and concerns that I have had as well. Thanks to all of you for providing so much encouragement, hope and practical advice on dealing with a little understand cancer-we really are in it together!

welcome, and seeing others make it as far as you have gives me a little hope. As I am always worried about every little pain.

Hi and thanks for the welcome - you were the first to respond to my intro! I think I was reading one of Brian Hill's responses to others asking "Where are the long term survivors - are there any!? And he said that though there probably aren't as many as we'd like (and that's why we're here to support each other using this forum) that there are long term survivors who have just moved on. I decided that we can never afford to just move on - whatever life experience - and cancer is a "life experience" - we're dealing with - it helps to know that other people have come out on the other side. I look forward to getting to know other survivors who are just trying to make it through each day just like me and you! Make sure you trust your medical team - my oral surgeon was a pitbull and was not well liked because he was 100 % pro-patient. I'm living proof that he put me first. Make sure you feel confident with those providing your treatment and follow-up

Welcome to OCF and congratulations on being cancer free for 8 years. It would be great if you filled in the signature portion of your profile so everyone can rad about your diagnosis, location and treatment steps.

Anytime a new survivor comes on board it is very exciting. Unfortunately the fear of recurrence probably never leaves any of us, but on a personal level, I find I do think about it less often now.

I wish you continuing good health.

I second, and then third Angelia and Jerry. 8 years... man! Given the rapid advances in medicine these days I'd love to hear how the treatment differed those few years ago, if at all.

Thanks for saying hello and congrats.

David 2

I found this board in a specific look for survivors of oral cancer. After I was diagnosed, all I found was the normal stuff on the internet and I felt like I was doomed.

Then I found this site and I realized that i had a fighting chance. I also learned a whole lot about what was coming.

This site made me a better patient. Thanks for sharing your story. I'm six months out from treatment and can only imagine eight years! My son will be 21 and that will be something to see.

It is definitely an "upper" to hear someone with 8 years survival. Like Kelly, I was looking all over the internet and all I saw was words like, "Unfortunately the five-year survival rate for oral cancer is very low especially if it has spread to the lymph nodes." I felt nothing but doomed. I even considered just going to Sweden and New Zealand and any other place I've been wanting to go before I died and forgetting the awful treatment all together. That was until I found this site and saw all the brave peope who encouraged me to go to treatment and I could make it through. Angelia especially helped me because we started at virtually the same time and had a lot of similar issues. We private mailed a lot and we both made it, despite the fear of the dreaded mask and that awful feeding tube. I sure hope I can still write something on here in 8 years.

Scootersmom, welcome to OCF. Im glad you have 'shown' yourself. I love seeing posts like your about survivors. Eight years is a long time, congrats!!!!

Christine - thanks for the welcome. I probably had this for closer to 9 years but couldn't get my "dental professionals" to take this seriously. In his defense, he may never have been trained in identifying something suspicious, so I was very surprised at my outcome when I finally took control of the situation. After surgery, I was starting to "unhoard" everything I had collected over the years thinking the end was near. The mind can be very powerful working for or against you. I'm glad I got it under control - I would be missing some great stuff!! One day at a time...

Hi, Scootersmom,

Your eight years plus survival is very encouraging. Congratulations! And welcome to OCF.

Anita - Thanks for the welcome and congrats on the "all clear" on the PETs. Since just "coming out" yesterday, the OC community on this site has been nothing but encouraging. I looked forward to coming on this morning to see what's up with everyone! Remember to take care of you and time for you. How is your husband doing now since surgery?

Sootersmom,

He is doing well. Thank you for asking. His new graft looks better every day. The thing we now are focused on is the severe pain he gets when he eats. I am hopeful we will be able to resolve this but it may mean going to a pain specialist. The PS wants to see if it will work itself out in the next 3 weeks. It surely makes eating a horrific chore for him.

Anita

Welcome Scootersmom,
We all love seeing survivors post here. Congratulations and best wishes for continued good health.

Thanks Gabe - I've learned so much in the last 24 hours! We've all had different versions of this nasty stuff but we're all hanging tough. Looking forward to getting to know more of you and hopefully in person at an awareness/fundraising event - early detection saved my life - that and a tough oral surgeon - it's something I'll have to watch for forever but doesn't everyone have something they're watching out for?
Stay healthy !! Signing off for the night - we're having a terrible thunderstorm and I don't have a surge protector! Take care!

Welcome to the forum. It's nice to have a long term survivior join the board. Here's to your continued good health.

Take care,
Eileen

Hi Eileen and thanks - this is when it really is great to be able to say "It takes one to know one" in the survivor category. It's sad that a long term survivor is as few as 8 years - I made alot of changes in my life - I don't know if they have had anything to do with no recurrence but I'm going to continue doing what I've been doing and hope that's the ticket. You also have quite a few years under your belt - how are you doing and dealing? Beth

I'm 'doing and dealing' just fine. Still working full time, still traveling and still spending my summer weekends on the beach. I miss not being able to go in the ocean or sing, but it beats the alternative. I'll live. In comparison to many, I got off easy. I'm too stubborn to give up.

Take care,
Eileen

ScootersMom

Congratulations on almost 8 years of NED. It is depressing to read the official survival statistics on oral cancer. A poster like you shows there is hope. I can still "croak out" a tune (literally sounds like croaking) but I could never "sing" pleasantly anyway so no big loss for me. I do miss going into the ocean or swimming laps though.


Eileen
I'm sorry to hear you can no longer sing, I'll bet you had carried a tune very well.

Charm

Charm,

I was a second alto before I had radiation so you can imagine where that left me. I never sang professionally so it is only a personal loss. The sad part was I was just getting my voice back four years out when I was diagnosed with the larynx cancer. We still go to the opera and listen most Saturdays, I just can't sing along. Show tunes and Christmas carols are what bother me the most. I used to belt them out every weekend on our way back from the shore. If that is the worse of my problems, I'll live. I'm not certain I could live with the side effects you are coping with. That's a mighty tough hand you have been dealt. You never cease to amaze me with your positive outlook.

Take care,
Eileen