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Joined: Aug 2010
Posts: 157
Nate82 Offline OP
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Aug 2010
Posts: 157
Hi,

My name is Nathan, I am 27 and recently became a part of the good fight my friends. Needless to say I have never felt so alone and scared in my entire life. I noticed a cold sore on my tongue about 2 months ago and tried treating myself with salt water and peroxide as I did when I was a child. This time it did not go away and only got bigger and a throbbing pain I cannot begin to describe.

As I visited a doctor he diagnosed it as an infection,gave me anti-biotics an sent me on my way, the problem got worse. The next visit he took a culture of the sore and diagnosed it as fungal then sent me on my way. About 5 days later I could barely eat and went in for a biopsy which came back positive as squamous cell. I have no health insurance and no one would touch me with a ten foot pole.

So I basically faked an injury to get into the county ER to have them CAT scan me as well as blood tests and x-ray. Finally after 14 hours a real doctor came in, took another biopsy and said from the look and feel she predicted me as a stage II. My mom has fallen a part as well as my fiance, now I am losing it and have no clue what awaits me. I have smoked and drank consistantly everyday for about 6 years now, I need guidance please before I lose this war. I have been sober 12 days and nicotine free for 9, my appointment for the consultation is tomorrow and I am scared of what they will say. Please, I just need someone Ican talk to, I feel shattered.


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Joined: Sep 2009
Posts: 126
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Sep 2009
Posts: 126
We are here. Feel free to vent, ask questions and share feelings. We have all been there and r emember those first "alone" days. First of all begin the process for Medicaid, with a diag. that should expediate the process. Others on here will respond and give you other recommendations regarding services when you have no Ins. Secondly, you will hopefully see from the many post, we are "survivors" and live good productive lives following treatment. Don't begin to think this is the end. There is good treatment available and you have to start thinking in terms of beating this! You have already begun the process by changing some of your habits, yea for you!


Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
Joined: Apr 2009
Posts: 329
Platinum Member (300+ posts)
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Joined: Apr 2009
Posts: 329
Nate,

I had tongue cancer I know how you feel and what your going through. I also went over the edge until I went to a Cancer Center. After my visit with them I calmed down, because I knew I was in good hands and they have the latest of the latest in techonolgy.

Seeing your in Texas contact M.D.Anderson Cancer Center that's where you want to go. Call and talk to them I'm sure they will help insured or not. I can't imagine anyone turning someone with cancer away.

Keep us posted. God Bless



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Aug 2010
Posts: 157
Nate82 Offline OP
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Aug 2010
Posts: 157
Thank you so much Sharon, I swear I was having anxiety attacks that I was in a fake forum where no one would ever reply to me. I dont know what to expect tomorrow, my mom said the social worker had our goldcard going as planned and my appointment is tomorrow. I have no idea what to expect and need some calming down. I literally have to psyche myself out to eat anything, I am glad I found this site, a friend located it for me after he saw how fast my mental state was spiriling. I need you guys so bad right now!


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Joined: Aug 2010
Posts: 157
Nate82 Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Aug 2010
Posts: 157
You do not understand now how you guys are making me feel, I believe I just have calmed way way down in just a matter of seconds. M.D. Anderson basically laughed in our faces Connie, It was the most surreal thing I have ever been through. This is when we almost went " John Q " on the situation but instead I had my mother take me to ER where I told them I was fainting,had a fever, and cold chills. After all day we got in the system and am on my way to consultation tomorrow at L.B.J. Hospital. The doctor became hip to my jive why I came through ER and said she would make sure I was ok and that the " fever,cold sweats" was actually withdraws from not smoking cold turkey like I did. Crazy Right? Gosh I needed this, I am so glad i have found you guys!


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Joined: Sep 2009
Posts: 618
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Sep 2009
Posts: 618
Nate,

I was stage I - II.

I made it through treatment without to much trouble and am now didease free. I was diagnosed 1 year ago this week.

I am back to my normal life with a few minor adjustments.

Keep the faith my friend.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Aug 2010
Posts: 157
Nate82 Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Aug 2010
Posts: 157
Thank you Kelly, Is there any way you could give me some advice? I mean, can you tell me your story, like how you found out and maybe what things you ate or drank? I am trying to keep weight on like they said and I am naturually a big guy at 6'4" 245lbs and now I am at 223 last time they checked. I need you guys so bad, The past 2-3 months have been ironic,scary and have experienced massive amount of deja vu'. I do not know what I am going into tomorrow or if this spread from my tongue to the lungs or nodes. Although I feel no soreness or pain in my neck, just earaches, tongue pain and headaches.


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Joined: Jul 2010
Posts: 16
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Posts: 16
Hi Nate, Keep going in the direction you are going. Drink lots of shakes and add those protein powders from GNC ( Nutrition stores) to what ever your drinking. I would make chocolate ice cream shakes with ensure instead of milk and add the protein powder too boot!!!

This is a great site with a lot of knowledgeable people. Keep asking they will answer. M, myself and everyone else are here for your. You have come to the best source.


CG
01 SCC LBOT 42YO-part gloss 5 mo rad
03 recur RSCC gloss & R Jaw removed
05 recur LSCC
07 recur RSCC recon R jaw fm left fib
09 recur LSCC gloss & LL jaw. recon fm rt fib
7/10 inoperable.TrachPEG-carbo/taxol
11/11/10 ca back begin erbitux
12/11/10 passed away in sleep - at peace at last!! XOXO
Joined: Aug 2010
Posts: 157
Nate82 Offline OP
Senior Member (100+ posts)
OP Offline
Senior Member (100+ posts)

Joined: Aug 2010
Posts: 157
Thank you so much, I will literally live on this site for a long time to come! Please add me, I am open minded, raised by a single mother who taught me values and morals, so believe me I do not judge. I need all of your strength and would like to hear your stories as well as give you mine day to day. This is amazing...


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF. You are at the right place for help. I am so sorry that you have joined our forum but also so glad that you have found OCF. We will guide you along and listen when you vent. We will encourage you when you want to quit and cheer when you overcome hurdles. You have just found your new best friends here.

I know you are having trouble eating but right now try to eat everything you want. Big hamburgers, steaks, mexican, or chinese food, anything you are craving try to pack it in now. Depending upon what your treatment will be, your eating functions may become compromised. Swallowing and your salivia could give you some difficulty.

Your age will play a part in how quickly you bounce back from this. Being young will help you fight off fatigue if you are given radiation.

I have added a link for the best cancer centers. If you read some posts, there are some from members who did not have medical insurance and how they got treated. Do not let that limit you to where you will go. This is not something to play around with. You must be completely honest with your doctors so they can treat this.

The main pages of OCF have so much info, you could read for days. There is a search function there also. Read and learn everything you can. Ask questions of your medical team and take someone with you to all your doctor appointments. A second set of eyes and ears is invaluable. Write down your questions so you dont forget. Get a second opinion for how you will be treated and choose the best hospital and course of action for you.

Most of all, relax and know we are here to lean on. You are not alone. Best of luck with everything.

http://oralcancerfoundation.org/resources/index.htm#centers



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
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