Hello. My name is Samantha. This is the first time I've ever used a forum so this is new to me. But I have been talking with Christine Brader and she says it would be a great idea to come on here, share my story and get to speak to others who have stories just like mine. Well as I said before I'm Samantha. I am 22 years old and I was 21 when I was told I first had oral cancer.

Around September or so of 2009 under my tongue I seemed to have these two ulcers that just wouldn't go away. Well when about October came around and they were still there I decided to see my regular doctor, he then sent me to an ENT near my home. This ENT took a biopsy of under my tongue. But he believed it was just some sort of infection in the mouth. He put me on magic mouth wash. It did nothing. The biopsy then came back negative but by this time a new ulcer had formed on the side of my tongue. This ulcer then started to literally eat into my tongue. The doctor didn't know what to do for me so he then transferred me to Johns Hopkins. There they preformed another biopsy. It was about the beginning of December 09 by now. This biopsy came back positive.

On December 22nd I had my first surgery. I had to miss my daughters second Christmas because I was in the hospital. I wasn't able to see her for about a week. She was a year and a half then. I had the left side of my tongue removed. They used my left forearm to rebuild my tongue and also removed 64 lymph nodes from the left side of my neck. They all came back negative for cancer. The doctors were sure they got all the cancer so they figured I did not need radiation. I was cancer free until September of 2010.

In September I started to get an odd pain in my neck. The pain would shoot from my neck into my ear. I had a spasm in my neck before so I just thought it was another one. I went to the doctors in case. There my doctor found a lump on the left side of my neck. I was shocked I didn't even realize the lump was there. The next day I was in excruciating pain and this lump was about the size of a golf ball. I was sent off for a ultrasound guided biopsy. This lump was weird. It was hard on the outside but the inside was filled with fluid. They took a piece of the outside and went ahead and drained the fluid hoping it would relive some of the pain. They were wrong. About two days later the lump had refilled plus. It was the size of a softball now. The pain was horrible, I could barely eat.

I went in for my second surgery around September 22nd. They had to redo my free flap and remove the tumor. To rebuild my tongue this time they took a blood vessel from my upper left leg and muscle from my left ankle. A few days later my tongue was failing. Back to the OR. They then tried to use my right arm to rebuild my tongue. Everything was going good for a few days again. But then somehow it failed yet again. Back to the OR. Three surgeries in less then a week. This time they took a piece of muscle from under my breast and moved it up to create my tongue. They tried to use skin to cover the flooring of my mouth. A couple days went by, everything was going good. The muscle did take this time but because I had so many surgeries my neck opened up. The skin was so damaged they could not sew it back up.

Hopefully I can explain this so people can understand, I still am not sure if I understand it completely and I've lived it. The docs told me my neck was open and that these three holes in my neck tunneled straight into my mouth, you could take your finger put it into one of the holes in my neck and reach into my mouth. They were sending me home like this! I had a nurse come twice a week for a while and my mother took care of me. They had to pack these holes with gauze about twice a day. I was released from the hospital in early October. The docs decided they did not want to waste any more time, that I needed to have radiation and chemo as soon as possible. They let me heal for a while and then started my chemo and radiation end of November beginning of December 2010. I finished mid January 2011.

Things had been going good. Till mid Febuary. I started to get abscesses and infections. Was in and out the hospital trying to get rid of these. Finally about two weeks ago a lump developed on my jaw on the left side. No matter how many times they dug and opened this new lump it would not drain, it would not go away. They did a ultrasound guided biopsy and I found out about the middle of last week that my cancer was back for a third time. How can this be? I just finished radiation and chemo. How can it be back at all let alone this soon?

Tomorrow I go for another ultrasound guided biopsy. My pet scan had two areas of my neck lit up. One we know is the cancer the other we are hoping and praying is just one of the old abscess. Monday 22nd I go for my fifth surgery. They will be redoing my tongue yet again plus removing my jaw on the left side along with the tumor and any skin that is in that area. Also I believe they plan on opening up the right side of my neck some to check more lymph nodes. Its so hard to believe that in a year and a half I have had cancer three time. And the doctors still can not even figure out how I got it in the first place. I did smoke once upon a time for about 6 or so years but they said in order to get this I would have had to smoke non stop for 6 years or I would have needed to smoke 10 or more years.

It is all so frustrating and scary. But what can you do. All I can do is fight this and beat it. I have a two year old angel that I have to be on the earth for. And I refuse to go anywhere. She needs me here and healthy and I will be. I'm not really mad about getting this. Honestly I know God does it all for a reason. I know this is all for the greater good of this world and I know that even tho the cancer is bad good things have come out of it. I am overweight but since September I have been on a feeding tube unable to eat regular food. That is quite a diet you know LOL. Not a good way to lose weight!! But I can't do much. I have lost honestly probably about 100 lbs so far. Plus all of this has brought all of my family so close and it has brought me so much closer to God. So I can see some of the positive outcomes already. Well since I think I have pretty much written a book here LOL I am going to go ahead and give my hands a rest. Hopefully I did not leave anything out.

Oh it's so hard to see someone so young as you going through all this. I'm so glad you have met Christine. Where did you meet her? She's the BEST. She was the first one that spoke to me when I came to this forum scared to death and she was a great help to me. There's so many knowledgeable people here. I think they know more than the doctors do. They have the first hand knowledge where the doctors just have book knowledge.

Samantha!!! I am so glad you are here!!!! Thank you for taking the time to write the introductory post!

I know how afraid you are and Ive been trying my best to help you. I put your FB "event" on my FB page and immediately my OCF friends came forward and added you to their prayers. We are a big family here, we all stick together! When one of us is down, we all work together to build that person back up. Bloop knows, she has been thru some pretty rough days this year and we stand right beside her ready to help any way we can.

Please read and learn from not just here on the forum, but also on the main OCF pages. Make use of the search function in both places. Dont be afraid of what you read. Everyone responds to every procedure and medication in their own way. You are unfortunately someone who has had a very difficult path. Ive been thru it 3 times in 3 years. I never saw anyone like that until you. You have gone thru it 3 times in 1 1/2 years... much too much for anyone!!! I saw your message on OCF's FB page and knew I had to write to you. I knew you needed us. You were asking if cancer can return so quickly and saw some people said NO. Immediately I was worried as I knew it really could happen that fast. Im so sorry it did come back that quickly.

I was also very concerned that you were being treated at a tiny little 'mom and pop' drive thru type of medical practice. Tonight I found out you really were at a top notch cancer center. Johns Hopkins is one of the best. As far as the WHY goes, it wont matter one bit in how you are treated. So dont make yourself nuts by worrying about that. You mentioned you had smoked for about 6 years, to me (no medical background here) that is the most probable cause. In the end, it really doesnt make a difference so lets worry about something else.

Your upcoming surgery is a big one. Ive had it and its not fun. Not that anything you have been thru has been easy. There are a few of us here who have gone thru that operation called a mandibulectomy. I hope and pray that your doctors will get it all and that this will be the end of you dealing with cancer. You are a young girl who should be out having fun and playing with that adorable little girl of yours. Your age is also something that will help you get thru this much easier than someone older.

Thanks for coming forward!!!! We will help you, Samantha. ((((HUGS)))) and prayers for you!!!

Samantha - So glad you are here and that you found Christine. She is an absolute Angel to so many of us here! So sorry you have had to go through so much but you have come to the right place to be with lots of wonderful and compassionate people to help you whenever you need someone to listen or a shoulder to lean on. You can be sure that you are in the thoughts and prayers of many here. Stay with us and let us know how things go.

Hi Samantha

I am so very sorry that you are going through so much at your age. I have a 22 year old daughter and as a mother it breaks my heart that you are suffering so much. But, you sound so strong and resilient. Plus, talking to Christine is the best therapy you can have. I know this from experience. I too had a recurrence in my lymph nodes soon after my first surgery. I found a lump in my neck just before Christmas..my surgery was in Sept 2010 so it had come back 3 months after or was there all along and was missed when I had the neck dissection where they removed 40 nodes ..all negative for cancer.

I had an ultrasound and biopsy which proved the lump to be cancerous..plus many more of its friends! So, back to theatre I went..this time I had a radical neck dissection. I start radiation and chemo on the 12th of April.

Christine is my mentor and friend..I could not have got over my anxiety and fear if she had not helped me. Through her, I joined OCF, met so many beautiful, supportive and kind people who I call my 'angels' and some of them are in Australia so I get to speak to some of them on the phone as well as through FB!

I can't explain why cancer strikes some of us the way it does..I found the best way to deal with it all was just to be grateful for each day and for all the blessings I have. I started to let go of the fear and I now live one day at a time. No one can predict the future..I have no control over tomorrow but I have power to live today in a way that makes me happy and fulfilled.

You seem to be handling all of this so bravely and with such positivity. With prayer, a positive attitude and plenty of love and support, miracles happen! I am a firm believer in that and you will see so many people on this site have survived despite the odds. For me, cancer has brought about so many new and amazing friendships, something I would not have had otherwise and I also appreciate my life more than ever. That to me, is a blessing that is rich and rewarding.

So, please don't let go of your positive attitude, keep the faith always and remember when you are feeling down and sad, you can vent here and we are all there to support you through it all. And know that it is okay to feel depressed sometimes, it is okay to cry and feel anxious..allow yourself to feel emotions as they come.

My prayers are with you Samantha..hugs to you and your little girl. God bless you xoxox

Samantha,


My dear, welcome to our oasis. Our little island on the net where people like us are surrounded by love and support from those that truly understand.

You've had a rough go young lady and it is heartbreaking...however to hear the spirit in your post gives hope. It reminds me of the quote from Independence Day "We will not go quietly into the night, we will not vanish without a fight."

The shortened movie quote of the Dylan Thomas poem:

"Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light. Though wise men at their end know dark is right, Because their words had forked no lightning they Do not go gentle into that good night. Good men, the last wave by, crying how bright Their frail deeds might have danced in a green bay, Rage, rage against the dying of the light. Wild men who caught and sang the sun in flight, And learn, too late, they grieved it on its way, Do not go gentle into that good night. Grave men, near death, who see with blinding sight Blind eyes could blaze like meteors and be gay, Rage, rage against the dying of the light. And you, my father, there on the sad height, Curse, bless, me now with your fierce tears, I pray. Do not go gentle into that good night. Rage, rage against the dying of the light. "


Rage on young lady, Rage on.


The Nietzche quote in my signature is my mantra...my Why is my two young boys and my wife, as your child is yours.

Keep that spirit on fire...thank you so very much for sharing.


Eric

Eric,

You made me cry tonight...you are an amazing man.

Hugs

Liza

When i first joined this forum 5 years ago it was unusual to come across young people with oral cancer.Sadly that is no longer so and all to often we meet brilliant young men and women with families and their whole lives ahead of them.It saddens me to see this disease keep on increasing in incidence and in aggressivness,despite all the incredible work done,but it gladdens my heart to see you all rally around to help and support each other,and with us old hands here,i think you have one hell of a network rooting for you samantha.

god bless you

Welcome Samantha! So glad you decided to join us, it's a great support group to have. I look forward to getting to know you and your lil girl!

Samantha:
Welcome.. you found the best group of people you can have in your corner. Keep up your positive attitude -- and your age is definitely a positive for you. It will allow your body to bounce back quickly. Listen to everything Christine B. tells you..... (she may not be a doctor, but she knows everything) and don't be afraid to post any new questions here.... someone will have info for you or point you in the right direction.
Hugs and prayers are being sent your way.

Ingrid K

Hi Samantha and welcome. So sorry you have to be here but so happy that you found this site and Christine, she's the best! It breaks my heart to hear how young you are and to be battling this and all you have been through. It sounds through your post that you have a great, positive attitude. You are fortunate that you are being treated at the best of the best - Johns Hopkins. Good luck with your upcoming surgery and I will definitely keep you in my prayers. Hugs

Hi Samantha! Sorry to find you here but welcome to our community! In addition to your terrific attitude you also have Christine and the fabulous folks at Johns Hopkins on your side. The best of the best!!

Sending positive thoughts, prayers and hugs to you as you face this upcoming surgery.

Hi Samantha:
I am so happy you joined the Forum - you have already gotten messages from some of the members, and it makes us all happy to be able to try to help you by offering experience, encouragement, advice, and PRAYERS. Consider Christine your mentor - she has been through so much, and her biggest goal is to help others. Please keep us informed on the Forum because as you can tell, we care for you and your sweet little girl.
julieann

glad you found this, i could have sworn i found you on here though and started talking to you on fb, but you probably never posted on here before.

I never did say that it couldn't be cancer, I said that I didn't think usually came back that quick and that the soonest i had heard of was just a bit under a year, but I am sorry that it is cancer. Makes me sad that you are going through this and you are a few years younger then I am.

I know you will pull through this like you have the rest of your surgeries and treatments. You are a very strong woman and have a great family full of support to back you. You also have your amazingly beautiful daughter to fight extra hard for.

I will keep you in my thoughts but I know you will pull through this just like you have the rest of your battle!!

Samantha,
I am so sorry you have to deal with all this at such a young age but it seems to be happening more often. You should be in good hands at Johns Hopkins. Good luck on your upcoming surgery and hopefully this will be the end of these reoccurences.

Take care,
Eileen

No! This is absolute f!%@ng!!! bullsh@t!

Someone needs to really challenge these tobacco companies ok! As said in another post the OC patients are getting younger, and I am finding more and more that are or were smokers. CHRISTINE! You are a goddess, you know the people at TRUTH and as a conspiracy theorist and MJ user myself I think tobacco companies are doing whatever it takes, even if it means adding more crap to their recipe of destruction.

Samantha, you kick ass! My doctors came to the conclusion that it was my smoking and heavy drinking that caused this. Is there enough research on energy drinks as well, just knowing more younger folk drink em, as I used to, even with my vodka. I so wish we could cause the downfall of their products, flavored this and that, friggin rappers promoting for them. It sickens me, and I wish would have stopped. Between my love Korinne, family and a very bold message from Christine, I QUIT! I even held on to one last smoke for a while and was convinced by the OCF to flush it, and I did. Samantha, youre tougher than I am...F%@K Cancer!!! You can follow my journey on youtube as well if you care to, Cancer Fight Log. I was 27 at Dx, get the list from Christine, you can friend the most of us on FB.

Your Friend,
Nathan

Thank you all very much. I am very happy that I found Christine B and this site. I know having so many people who know what its like to go through all that I have and am going through will be a huge help to me. I will hopefully not only be able to get help from but hopefully I may be able to offer some help to others as well.

Hi Samantha,

Welcome to OCF! I truly wish that you did not need to be here, but it is the best place for support and information on OC!

I had OC twice and three surgeries so far (plus radiation). I had a biopsy a few weeks ago that showed moderate dysplasia, so I�m going to have another surgery in April.

I see you were treated at Johns Hopkins? Who is your doctor? I started seeing Dr. Wayne Koch at Hopkins last year and he will be doing my surgery in April. Great hospital and doctor!

I will keep you in my prayers. You are way too young to have to deal with this. By joining OCF, you will have people from all over the world praying for you and offering support and advice.

Hi samantha... I'll echo almost everyone else, sorry you have to be here but it is a great and supportive group so I'm glad you are.. I'm fairly new as well. but if I can help in any way please pm me. It's terrible that you have had to go through so much especially with such a young family to care for, but you are young and have an amazing attitude so that will help you get through the hard times. I. The interim, take care of yourself and enjoy your time with your children, that is the best therapy.

Hugs, healing and prayers to you.

Samantha,
So glad Christine told you about this forum. You will have a lot fo support here. I have not been through as much as you have, but I do know how hard it is with young children. Your post made me cry. I will be praying for you, and glad you friended me on facebook. I will also be praying for that little one you have and your family. Keep us posted.

Hi Samantha,
Your post made me cry too. My daughter was 11/2 years old when got diagnosed with tongue cancer last march. I remember the fear that I had - not for me but for my precious baby. I also remember how hard it was going thru tx with a small bub and I didn't have to go through anywhere close to what you what you had to. My heart hurts thinking of what you and your family have been through. I'm glad you have found this forum, it is such a great form of support. I hope things will be better from now on for you.

Minh

Hi Samantha!! Glad that you found us. Sorry your here but this is the best support system ever and Christine is just amazing. Don't be afraid to post anything on your mind. We have all had some bizarre thoughts at some point. Love your outlook on things. God bless.

Samantha, I just read your post and please know that you are in my thoughts and payres. As we say in NA, AA, and all other A's...you're in the right place. So welcome. I am very new here but I have found soooo much strengh and hope here that I jones to get home and log on. Of all the terrible things I've done to my body over the years I wind up with "sexually transmitted cancer" WTF!!! An IV drug addict for two decades and because of being careful no HIV or hep C. and I wind up with this??? I just don't get it. That being said I am looking for this to make me the strongest fighter on the planet and do something positive with my life (I've wasted a lot of time over the years). You are young and strong and something great will come out of all of this for you. I promise. Will Zinn