Hi everyone I'm new to this site, and well here it is August 22, 2012 I was diagnosed with SCC of the Tongue. I would never forget this day as to me this day my world came crashing down at the speeed of lighting..I couldn't believe this was happening I'm 30 years old with two children that need me! since then I had a partial glossectomy and a neck dissection 25 lymphs all clear, at first I was told it was T1 but when I had surgery I was told it was more of a T2 because the tumor was about 3 1/2 centimeters. I am now scheduled to have radiation therapy 5 days a week for 5 minutes for 6 weeks this is due to the fact that my margins where close and there was some nerve invasion. I am torn apart all I do is think of my children and how long I would be on this earth to care for them and see them grow. What terrifies me the most is the thought of recurrence, there is no history of any type of cancer in my family, I smoked for four years maybe about a pack a week and I'm not much of a drinker also HPV-, how did this happen...my guess is as good as yours. As you can see my thoughts are all over the place, all I do is think about this all day is like it has taken over my life, my mind. I'm a very strong warrior this I am aware of, but this CANCER has made me fearful more than for myself for my children. My radiologist says I'll be fine and will be able to see my children grow into men and women, my family and friends are very supportive but nothing takes away this fear and this hopeless feeling.

Sweetz,

I too was diagnosed in August. I am 39, and this was a complete shock. They took 50% of my tongue (the tumor was over 4 cm), and lymph nodes from all zones, which made me T4. I will be starting rad and chemo shortly.

Trust your doctors. Mine said I would be fine, and I firmly believe that. He said I would be talking shortly after surgery and I am.

You are not hopeless. You fight with everything you have for yourself and for your kids, and you will see the benefit. My friends and family are astonished at the speed of my surgery recovery, and I attribute that to my motivation to get better, and a good attitude. It's ok to feel scared and angry, but don't let that interfere with your treatment and recuperation.

As I have told my friends and family, this is a bump in the road, and it just takes some time to get over the hump.

We can do it together!

Tina 77
Thanx for reaching out, my recovery has been very good as well I can talk and be understood well and I have yet to have any speech therapy. I know I need to be super strong for my children, and although I give it my all every day I still manage to have my weak moments as well EVERY DAY. I find myself crying on my drive to work, during showers, you name a moment and most likely I'm crying..I trust my doctors, and I'm always reminded of how lucky I am on every visit to have found my cancer at a early stage and to have such good prognosis...so I ask myself why do I still have this incredible fear, I've always been able to tackle situations head on with my battle gear ready, but this THING just has my emotion and thoughts all over the place.

This is a bumb in the road...let's "get 'r done" Tina

Just know that all the emotions you are feeling are normal and keep venting on here. We really DO understand what you are going through. Sometimes you can get something to calm you a bit from your doc. I needed that and I was the caregiver!! It is VERY overwhelming.
Hang in there and let Tina be your role model!! She rocks!!
Kathy

Sweetz, if you're anything like me, you're a self professed control freak. I have always been super independant, and have an iron will. People have always described me as "strong", and while I am, I am subject to the same fears and insecurities as everyone else, I simply choose not to show them. To be told that you have a disease which you have no control over is so hard to accept, it's almost impossible to not feel overwhelmed.

I too have cried in the shower (so no-one could see), but then I get out, shake myself off, and take a deep breath. I try to focus on today, because who knows what tomorrow can bring. The only thing here I can control is how I react right now, and I choose that reaction. It may be a limited view, but it helps me get through each day, with a semblance of control. It's the whole "can't see the forest for the trees" philosophy...one tree today, and the next tree tomorrow.

I'm here if you need to talk, about anything, even if it's just to be pissed off!

Thanx Tina and Kathy,
Tina yes, I too am a control freak..lol not having control is what freaks me out the most, the all too familiar words that play out in my head day in and day out from my radiologist "your chances for recurrence are overall low, however there is no such thing as zero" those words scare me the most! it's crazy to me how I've made it through so much in life, but these few stupid words are bringing me practically to my knees. But just a week away from Radiation therapy it's time to shake it off and put on my bring it on jersey and helmet and do a little tackling!!

I must say expressing some of this feelings of anger and fear has really been helpful! I think this beast has to be battled from the inside out, as it affects our emotional being a bit harder than it does our physical being.

Sweetz - You've come to the right place and I'm so glad you are here! There's a wealth of all the latest information and wonderful people who've been where you are now. Your radiologist is right you WILL be fine! You have a lot going for you. You caught this at an early stage and are already beginning the fight. Your children are a really big reason to keep going. Rather than think of all the negative "what ifs" try to keep thinking of all the reasons that things will go right! It does help if you have someone also pretty close in treatment as yours to keep up with and Tina seems to be one who is so she's a good one to partner up with! Do talk to your doctor about your feelings to see if he can prescribe something to help you feel better so that you can be a happier Mom for your children. Come here often - and let us know what is happening with you.

Anne-Marie,
Sounds like a plan. I think having a partner, someone that knows exactly what I'm going through and feeling will really help alot. I will keep everyone posted on what's happening.

Can't wait to fly through therapy and keep this invader away for good!

I am here to partner up, or whatever you need.

Remember, nothing is a guarantee...better odds of plane crash, etc., worse odds to win the lottery but people still buy tickets!

Sweetz,

Where are you being seen?

The radiation plan of only 5 mins per time seems way short of most times.

Sweetz, welcome to OCF! I am so sorry you have gone thru so much and have a long road ahead still. The reason why you got this is something that is bothering you but it really is irrelevant, the treatment will be the same no matter the reason.

Being young, you are at an advantage. Your body will heal faster and you are stronger than someone elderly. Try your very best to think of all the positives how few they may be right now.

Your nutrition and hydration will play a huge role in how easily you get thru your treatments. At this time eat everything you can as your sense of taste will change and eating will become more difficult down the road.

Being a mother of young children, when someone asks what they can do to help, tell them you will let them know when the time comes. Write down their name and contact info and start making a list. Now is not the time to be proud, anyone who wants to help, let them. It could be something as simple as taking the kids out for ice cream or doing a load of laundry, it will all come in hand. Contact the American Cancer Society and arrange for help with rides to and from treatment. They will also give you up to $300 to use as a voucher for medications or transportation. Take all the help you can, you will need it.

We will help guide you thru the rough times and help you will recovery and treatment tips. Hang in there and you will get thru this. If you are overly anxious and worried a therapist may help, some patients take anxiety meds too. Do whatever it takes to get thru this. These things are all just tools to make it easier.

Best wishes!!!

Hi there... As of nov 4, I am 18 mos post treatment. I was diagnosed Dec 20, 2010. It was a dismal Christmas. Made a little better by the fact that my family Dr. was very optimistic, I had two CT's that said the cancer hadn't spread - which by the time I had surgery it had - to one node - and that it was defined as well differentiated. That got me through christmas and one of the top surgeons in Canada (a pioneer in his field) performed the surgery. I was a T2 as well. I healed quickly, then went on to do radition and chemo despite the fact that according to my surgeon - "in his opinion I am cured" - he was taking no chances and removed 40 lymph nodes - the one I had literally popped up between DX and surgery... max 6 weeks. CTs don't pick up microscopic cancer. That's why chemo is imperative as is rads.

Neither are easy... rads being the worst, but you will get through it. I am not a control freak perse. However, where my health is concerned I am super diligent. I used to be a nurse and know how people get lost in the fray etc... and things do get missed. That said. Advocate for yourself, educate yourself, and push yourself because despite all the support in the world this is your journey, and you alone are the only one who can motivate yourself.

Try not to freak out either... I know it's hard not to do. I am a few years older maybe 10 but I never smoked, drank, did drugs, and I've been a veg head for years. I attribute my cancer to chronic irritation of that area.

The one thing you need to accept is the fear. It will always be there, it's normal. Despite being okay for the most part, everytime something unexpected pops up in my mouth, or every appointment, or every scan, you get nervous. I've gotten to the point where I try to enjoy every day. be grateful for being here. And the reality is... I have had cancer... but I could just as easily die tomorrow from stepping off a curb, or in a car accident. Do what you can to prevent a recurrence. Educate yourself, look into nutrition, be diligent, seek out the best medical treatment, and best doctors at the best facility. Then believe you've done all you can.

hugs. sorry you had to join our group. But you will get through it.

Hey, Sweetz,
As others have said, welcome to OCF. Sorry you have to be here, but glad that you found us. My primary was on my tongue as well and had gone into my lymph nodes, too. I had the glossectomy and neck dissection and 7 weeks of radiation with three "big" doses of cisplatin. I never smoked in my life, was a light drinker, and was negative for HPV. Christine has given you some good information. There are many amazing people here who will help you on your journey. Good luck. We are all here for you. Hey, I was stage IV, and am now over 3 years out and was able to see my first grandchild.

Hi Sweetz,

Sorry to hear of your condition.

I,too, was diagnosed with tongue SCC about 6 weeks ago and had surgery to remove the tumour a few weeks ago.

I am even younger than you (25) and have no family yet. But when you get such news from docs you really get to understand what is more important in this life.

Try not to worry about it - you will be fine. I, too, tried to cry a few times and was concerned that my quality of life may change. However, worrisome and negative emotions won't help you and won't cure the desease. Stay positive, and believe in the best. Trust your docs and remember that this desease is curable and it's not death sentence - you just need to go through some kind of medical input. Don't think that it's a tough road, believe it's doable and you will cope well because you are young and you won't note how soon you are done.

I also used to smoke a pack of cigarettes per week between the age of 17 and 21. Then I gave up. I drink socially.

I have also heard from other young people that they used to be light ex-smokers in the past and that they got SCC at a later stage. Perhaps it could be a new topic to study - if there is any connection of 3 cigarettes a day and SCC.

Allen Carr, who has written 'the easy way to stop smoking' (this is how i gave up actually) says that smoking 3 cigarettes a day is more harmful than smoking 1 pack a day. It's better to smoke properly or not to smoke at all.

Gook luck with rad and have no negative thoughts!

Max

Thanx Max,
I'm trying to focus on the possitive and let go of all the negative stuff. I know that possitive thoughts bring possitive out come, sometimes I just need to be reminded

When I had my consultation with the radiologist I remember sitting in the waiting area and all I saw were faces no younger than 60 yrs of age. I remember feeling so bad and alone at that moment, I remember thinking how can I relate to anyone here.

For a while I didn't want anything to do with any support groups or what not. I guess it was fear, anger and most of all denial, I didn't want to believe that this was happening to me at 30 yrs WHO GETS ORAL CANCER AT 30??? But I've come to realize cancer knows no age, gender, sex or anything it just happens.

Yep Sweetz, she's a bitch, but one who can be beaten to submission. We're all a testament to that!

i'm too probably the youngest patient, who have been diagnosed with scc, in all entire hospital where i am having treatment... my docs were very surprised at my biopsy results when they came scc... but there are so many young people, who have been diagnosed with scc, on this forum...
and they still don't know what causes oral cancer in young adults.. i don't even know what i've done wrong given that i have always been trying to eat healthy and to maintain healthy life style...
but yes..it's a bitch and we will fight this bitch

Max you should meet with aussie Dave he was 18 at the time of dx. mind blowing, and there was a young girl here las year they couldn't get on top of it where she was concerned. She battled for 2 years she was 20 when she passed. Eyes widen - particularly when you say I don't smoke don't drink and exercise daily - we dont match the demographic.

Take care

Cheryl,

if you are talking about this Dave (http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=130391) then my first message was posted in his thread.. this is actually how I found OCF when I was googling but it seems he hasn't been here since January.. but he was 21 at dx. perhaps you are talking about someone else?

Yes, I think that is the Dave Cheryl is referring to. Dave was 20 years old at diagnosis.

The other person, Samantha had just turned 23 when she passed away. Much to young!!!! She left behind a young child who was only 3 years old.

A couple years ago we had a nice young girl from the UK who was only 17 when diagnosed. She sailed right thru treatments. Last I heard, she made a full recovery and is doing great. She was the youngest one on the forum, I also met someone who was diagnosed at 17. His was caused from chewing tobacco. Even younger, I have seen a girl from MT who was first diagnosed at 15, but it was not SCC, hers was a form of childhood type cancer that appeared in her jaw area.

Ive been here for over 5 years and have seen at least 10 members who have been 25 or younger at the time of diagnosis. Most have gotten thru it but sadly a few havent made it. One young girl Stephanie Bradley was such a sweet young girl who went thru all kinds of after effects of her battle with oral cancer. She was another one who sadly passed away, I think she was only about 26 when she died. It breaks my heart seeing patients go thru so much at such a young age. Just goes to show you that oral cancer doesnt discriminate, it hits both young and old, rich or poor and all races and religions.

Yes Christine, all is correct... It seems to be so unfair when such young people die as a result of oral cancer. But what is the reason usually that treatment for them is not successful? Is it because it spreads into lungs which makes things much worse?

Hi Sweetz,

There are quite a few with similar cases to yours and around the same age - my wife is one of them.

Will make sure to keep you in our prayers also and best of luck with the ongoing treatment.

Hi Max,

No one knows the answer to your question but all of the research I have read seem to point to the fact that the cancer formed in younger patients with no risk factors tend to have a more aggressive form of cancer.

Hence it is critical that you use your age as an advantage and go for the full arsenal of treatment available at your disposal to prevent the cancer coming back.

This is because there are a lot of studies that suggest that younger patience who go through the first 2 years without a recurrence tend to continue on staying cancer free for prolonged periods of time (one study showed 30 years, others showed 10-20 years).

Keep at it and I wish everyone going through this journey all the best and our prayers are with you.

Not one of these young people mentioned who died from OC or medical issues related to OC had any mets to the lungs. Each one was a different case and each one had their own seperate issues.

The questions about why is not anything that anyone here would be able to answer. We are not medical professionals with years of education, training and experience along with each individuals entire medical chart in front of us. There is so much to learn about cancer and why some die while others live, how it randomly appears when some have no known cause, and the big question.... how to cure it. Only thru extensive research will scientists learn enough about cancer and one day have a cure and an answer to those questions.

Hi yes you're right not sure why I though he was 18 - but that is the right Dave - he's out living his life too, making people aware. And Christine is also right about the aggressiveness, for some reason - it seems to be more aggressive in younger people - that's why we suggest doing all you can at first dx. Dave's dr must have been good as he caught a spread to the untreated side (opposite side of his tumor) during radiation and added more treatment to hit that side.

Samantha - god bless her - she was so young. She eventually died from an infection - the drs had been chasing it around her head for two years. They just couldn't get in front of it. They eventually stopped treatment saying her infections (she had fistulas that wouldn't heal) would kill her before the cancer did.

Proactive when dealing with this is far better than reactive. Hugs! So glad you're doing well.

Hi Sweetz! Our case is almost the same, at the same age! I discovered my Tongue Cancer when I was 29, it means last year. On october 28, 2011 made my biopsy and It didn�t came back cancer. But I was REALLY resilient and went to 3rd second opinion. Made surgery with frozen bipsy and yes, it was cancer. Had the tumor taken of and partial neck dissection.

It will be a year in some weeks. Hope you go through this ASAP! Try to be calm. I was exactly like this, in panic. I still have my momments but life Is pretty back to normal.

I always make jokes with friends at our age. 50 shades of grey of cancer: lots of feelings, creeps just to look at the 50 shades of grey of the MRI films!