Hi all - I was told last Weds that the stage 3 tumor I thought I beat 14 years ago is back; I wasn't aware of this site then and am hoping I can help and get help from the folks here. I had the SWOG (southwest oncology group) protocol last time, it (chemo plus rad treatment only, no surgery) was a phase 3 clinical trial then and no one knew about HPV. It was bad but not as bad as my current prognosis, which at this point is ressecting 60% of my tongue, so I'm pretty down right now. Hope I can get more positive and be a contributor here.

Welcome to OCF! So sorry to hear about your recurrence! Being 14 years out is a very long time! This could be considered a brand new diagnosis since it so many years.

So much has changed since your original treatment. The very best thing that can be done is to find a comprehensive cancer center (CCC) for treatment. Now doctors are doing radiation more than once, when not that long ago it was never done.

Hang in there, you now have OCF members to help you get thru this. We will give you info and support which can be very helpful.

Best wishes!!!

CCC list

JNeal - so sorry to read of your reoccurence/new incidence. I have no doubt that you'll find much that is new and hopeful in today's treatment. Don't worry about being a contributor - just use your new OCF family for any help you might need.

My thoughts are with you.

Thanks Christine and David, I very much appreciate your supportive words (and actions in being so active in this site). I'm at Univ of Michigan Cancer Center, as I was last time, and have a lot of faith in the team, they seem to do more than their share of publishing in the field. Still up in the air which way to proceed, but I'm hoping as you said that this is a completely new tumor and not a recurrence of the last one, which may keep the non-surgical option open, though it's a rob-peter-to-pay-paul sort of thing, isn't it? Lose my tongue now thru surgery, or lose my jaw and tongue long term due to twice being severely radiated? Leaning toward keeping the tongue as long as possible...

Thanks again. Good luck to everyone facing this.

HI there welcome. Your tumor if on your oral tongue may not be HPV related but they should test it if and when they resection it. Try not to worry this is a flukey disease many stage 4s have walked away from their dx with no problem and we've lost some stage ones. The poor prognosis of oral cancer is based on a melting pot of people - A lot of the older and in poorer health. Since in the past OC had a lot to do with poor habits - heavy drinking and smoking, those numbers are skewed - even if you are older, as long as you are in reasonable health and do what has to be done, you should be fine. Ideally oral tongue treatment involves a resection of the tongue and then depending on margins and nodal involvement rads and chemo. The good news is rads has changed a lot, and likely you can have it again. Please do push to be seen at a CCC and most importantly do whatever you can at this point to beat it. Do not tread lightly. throw the book at it if that option is offered. particularly if it's not HPV related. hugs. and welcome.

Welcome to OCF and sorry to hear about the dx. Sounds like you have the correct wheels turning so hope and pray for the best. Technology advancements are rapid and surely many avenues for treating you this go around are new and better. best to you, don

Hi there, I am very sorry to hear about your dx. I will say though that I had about 60% of my tongue removed and reconstructed, and it is not as bad as it sounds, if that is the path that they take you! it is a difficult journey, but i have relearned how to eat everything, and my speech is very good - some people cannot tell anything is wrong, others assume i have a retainer in my mouth. could be a lot worse!

Also, from what i understand it is sometimes hard to tell how much will need to be ressected until they actually get in there to do the surgery. the doctor prepared me for having about 30% removed with no reconstruction, and i awoke from surgery with 60% gone. on the contrary, someone else i talked to was prepared for at least 50% with reconstruction, but only ended up needing 30% removed with no reconstruction. i think it is hard to tell from scans until they get in there and start testing margins.

On a different note, do you mind me asking how you discovered the new tumor?

Good luck!

JNeal, my heart goes out to you! No one should have to go round two, but you got through this once before and you can do it again. I hope that 14 years from now, they've found the cure!

[quote=emilyp]
On a different note, do you mind me asking how you discovered the new tumor?

Good luck! [/quote]

Hi Emily, and thanks for the note, it touched on everything I'm worried about...as far as discovering it goes, it was different from the first time, where the tumor was much less noticeable, just a sore on the middle of the back of my tongue that I ignored for several months, ending up being classified as base of tongue. This time it is on the surface and farther forward, and I was hoping it was scar tissue from the first time that had moved to the surface; it was easily seen and felt. I delayed having it seen for maybe a month or two (delusionally), and at first the doc thought it might be scar (soft tissue necrosis is what I think I heard), but he biopsied it and came back with the news. I live a very good life, great wife and two hilariously entertaining kids, and having beaten it once with miminal side effects I was feeling like I lead a charmed life. This hit hard but the truth is it hits hard for every single person.

Very glad to hear your story and how you've relearned and coped, continued good luck to you.

Thank you for sharing. I worry about a recurrence every day of my life, so any things to look for are certainly a help. i understand the waiting part, i feel like i have a new sore just about every week so i never know which ones to consult the doctor about - i don't want to be crying wolf constantly. its scary how fast it grew - waiting a month or two doesn't seem delusional, considering how often these things turn out to be nothing.

since it has been so long since your first cancer, hopefully the combined side effects won't be too bad and it will be easier for you, compared to someone that had a recurrence in a shorter period of time.

i pray that everything goes well and you can kick this cancer's butt a second time! and if i can make it with 40% left of my tongue, you can too! if you do have to have the surgery though, just know that progress is continuous for years to come. i used to get down on myself at my speech and eating, but even if i compare my speech now to how it was just 1 year ago (9 months after surgery), there is a huge improvement. several months after surgery i remember thinking i would never be able to eat a sandwich again, but now i have no problem!

Anyway, please hang in there and keep us informed. you are in all of our prayers