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#131392 03-15-2011 11:36 PM
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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.

Joined: Jun 2009
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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.


BOT-SCC Partial glossectomy 7/16/09.
Stage IV, Rt ND 10/2/09.
Teeth out 11/5/09.
Port/peg in, 11/20/09.
7 wks rad & chemo, end 1/22/10
lung, colon biopsies 1/9/11 - both cancer
colon resect surg 1/10/11
Folfox + Avastin - discontinued 6/11
lung surgery 3/13/12, 5/1/12
mets to liver and bones
passed away 9/4/13
Bloop19 #131394 03-16-2011 01:34 AM
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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!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Bloop19 #131395 03-16-2011 01:40 AM
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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.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Bloop19 #131396 03-16-2011 01:47 AM
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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


SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
Lizzy67 #131403 03-16-2011 05:19 AM
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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


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #131405 03-16-2011 06:11 AM
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Eric,

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

Hugs

Liza


SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
Lizzy67 #131406 03-16-2011 06:46 AM
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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


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Lizzy67 #131407 03-16-2011 06:51 AM
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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!


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
ESikon #131410 03-16-2011 08:03 AM
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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


DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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