Hi, everyone i just stumbled onto this site (thank God),,i was diagnosed w/ scc on left lateral tongue 11/09 and had surgery on 12/03/09,,after 2 scrapes of my tongue the margins were clear and i went home dealt with the pain and began healing. Meanwhile i was so thankful that it was stage 1 and caught early because i have 3 young kids ages 10 and twin 8 yr olds. Now only 4 months later i have another suspicious area on the same side in which i am having a pet scan done 2maro. I am 35 yrs old and am so scared that if the cancer has come back this soon what is my prognosis and what do i tell my kids???

Cooking,

First I will tell you that I can relate to your situation. I was diagnosed 2 years ago at 33 with Stage 4 scc with two young boys to raise and it is a difficult situation.

The most common advice and probably most difficult to take, is to stay calm and realize that it's not cancer until biopsy says it is. Until you know for sure that you are facing a recurrance, let's try not to let the mind wonder as it can take you places emotionally that you shouldn't go to.

I'm glad that you've found this site, take comfort in the knowledge that you are among friends and people that can relate to where you've been and what you are experiencing. Where everyone's journey is different, there is comfort in commonalities.

My next bit of advice is a little easier to swallow then the first, but not as much. I would tell you to not get ahead of yourself and wait to see what the scan says...just take things one step at a time, it's much easier to tackle things as they come then to worry about the future and deal with the present.

We are here for you no matter what the situation.

Best Wishes

Eric

First off don't assume this is cancer until at least the Pet results come back and then only another biopsy can confirm it. Even if it's cancer there are plenty things that can be done to kill or get rid of it.

Were you a tobacco user?

Hello, welcome to OCF. Im so glad you have found this site. I was in your situation, twice. My children were older than yours, 15 and 17 the first time I went thru it. I had 2 recurrances, and luckily, Im still here to tell about it.

First, why are you having a PET scan for a suspicious area? A PET scan is a very expensive procedure that usually is done after a biopsy to help determine how advanced the cancer is. PET scans are notorious for lighting up for an inflamation and giving false positives. Do you know why your doctor isnt doing a biopsy? Thats the only way to tell if its really cancer.

I wouldnt tell the kids anything til I had a treatment plan in place. That is, IF it is cancer. Its not cancer til the biopsy says it is. There isnt any reason to get the kids scared at this point. They are young and already have gone thru it once, Im sure they would be terrifyed to know it may have come back.

Are you being treated at a cancer center? Thats where doctors all get together and go over your case and together come up with a treatment plan. Sure sounds like you got off pretty easy the first time around. I hope you never have to go thru chemo and radiation. Thats alot harder than recovering from surgery.

For tobacco users, they have a higher recurrance rate than HPV patients. I unfortunately was a stupid person and had smoked. I quit immediately after the OC diagnosis.

Please keep us posted. Wishing you the best.

Dear Cooking,
So glad you found this site. My mother is an OC patient and I have learned much from the people here and they are all so helpful with advice and most of all, support. You will feel like family here. I'm sorry you are having to deal with this again and will keep you in my prayers that it is NOT cancer this time but if it is, just take it one step at a time. Take care.

Waiting to hear what you have found out since you first wrote. I think you have been given some great advice - take things one day at a time - do NOT get ahead of yourself. We all have enough to deal with each day. Catastrophic thinking does no one - ESPECIALLY YOU - any good at all.

I don't usually tell my children (who are older) anything much until I have some confirmed information. And, when / IF the time comes, you will find the strength and will to deal with treatments - but you need to do it ONE STEP AT A TIME. Breathe deeply - relax those shoulders, and go out and enjoy TODAY.

Hugs

Donna

Someone mentioned something about whether you were a tobacco user or not - some of us here were, some where not (HPV 16 or bloody back luck). If anyone asks you this question - it is not to be judgemental - it is that they are getting info on those who have an HPV connection.

I was a tobacco user - but obviously didn't quit in time to avoid cancer - or who knows why I got it?? Some doctors believe their is a difference in treatment based on cause, some don't - we all look forward to additional research on oral cancer.

Maybe you are like I am and the name they gave my OC is that it is unique. LOL Whatever that could possibly be. You have some good answers from some very intelligent Ocers. Good Luck and will watch for your posts..

Hoping its not a reoccurence, hard not to panic over it after everything you have already been through but try to stay calm. Welcome to our little group!

Hello and welcome to OCF, sorry you have to be here. Take some deep breaths, think good thoughts......Hoping it turns out to be nothing! Carol

Wow thank you all for the words of wisdom and support,,i'm not sure why the petscan first they said they could get a better view of my neck since during the fist occurence i refused the neck dissection. I am also scheduled for a biopsy on my tongue on 4/16. But listening to all of your stories makes me feel like i can handle whatever it is and whatever treatment they tell me i need. I am a little worried about the fact that my current oncologist has not had many dealing with oc.

If you are concerned that your oncologist is not that familiar with OC, then you need to be seen by someone who is -- whether for a second opinion or for continued treatment.

As a starting point, take a look at this list of National Cancer Institute-designated cancer centers. With the exception of those few that do only research, all these should have a dedicated head and neck cancer clinic where the only thing they deal with, every day, is this type of cancer. In your home state, the cancer centers at Wayne State and the University of Michigan are both on that list.

Your current doctors should welcome another opinion from people who deal with this on a daily basis. (If they don't, you need new doctors!) At the least, you may be told that what your current docs are doing is what the specialists would do; you also might hear of treatment options that your current docs are unaware of.

I wish you all the best. This is the best place around for information and support.

Mom,

Take Leslie's advice right away and get an appointment at one of the two centers that she pointed out.

It is imperative that OC be treated by someone that has the experience as well as the support of a team of doctors, better known as a tumor board.

As said before, only a biopsy can determine if you have cancer.

Cooking,
You have gotten a lot of great words. I will tell you your story sounds like mine. I had surgery with clear margins, and another lump 3 months after a clear PET scan. Unfortunately my new lump was cancer. I am now in remission and been told that my prognosis is really good because I was blasted with rads and chemo. We also caught them very early. You will be fine. Let us know how your PET scan turns out.

Mom,

I am in Michigan and was treated in Grand Rapids. I recieved a second opinion from U of M. My RO is from U of M also. I got great care from a team that only workes on cancer.

Where are you in Michigan?

Cooking,

it's heart-breaking to go through this no matter what your circumstances are, but to do it while raising young kids (I was diagnosed at 38, a little over a year ago, and have three kids - the twins were 6, and the oldest was 10 at the time). My little ones knew that I had to have a surgery because I had "a hole in my tongue" (that's a medical term ! ), and the older one didn't know much more. They still don't. They saw how scary I looked when I got home from the hospital nearly two weeks after the surgery wrapped in gauze, with feeding tube hanging out of my nose, unable to speak and eat, they saw how sick I was during treatment, and that's more than they should handle already.

Now, I look fine, I eat fine, I speak fine (can't roll my Russian Rs, but that's my biggest problem for now, thank god), and we're over the scary stuff. For now. I know that I'm always one visit away from getting on the same rollercoaster, but my kids don't need to know that.

Just do what your gut tells about talking to your kids, but they are at a very impressionable age, and I am pretty sure your 10-yr old can google as well as anyone, so keep that in perspective. They will internalize a lot, and project a lot. It's all very individual. I think the way we handled it worked for us. My oldest knew I was going through radiation (didn't know much about chemo), but he was too young to know what that's for. Had I said cancer, it would have devastated him.

I also met a mother of my kids' friend who is a psychologist, and she was all - you must tell them everything because they need to be prepared if you die. Um... NO!

I know I'm rambling. But there is no right and wrong here. Just don't jump to conclusions and don't scare them earlier than necessary, that's all.

Million hugs to you. I hope everything goes well with you.