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Joined: Nov 2008
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I have had an "ulcer: on my tounge since August. My dr finally refered me to an ENT. They did a biopsy last Thursday. The results are in SCC. I have to go back for addl tests tomorrow or Friday to see if it has spread.

I am so baffled. I suppose I do not understand how this happened! Just turned 23, smoked for 3 yeart on & off about 1/2 pack a day or less. Decided to quit recently, I was just married!

I am just so upset & angry. Is that normal? What am I to expect? My dr says it is smaller than he thought so that was good news. I just pray it has not spread.


*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!



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Shaylynn:

Welcome to OCF. You will find lots of support here to help guide you thru this. Many people here have been right where you are and will help you. We do understand its a very scary time for you right now.

You are young to have to go thru this, but its not unheard of. We have another active memeber who is your age and had a young girl who was only 18 here too. All have made it thru their battles. Being young will be to your advantage to fight this.

I know its very early in finding out and probably your head is spinning right now. After your get a PET scan that will determine if the cancer has spread and what Stage you are. From what you worte, it sounds like no treatment plan is set up yet.

My words of advice....EAT. Eat like crazy now, dont worry about gaining weight, just eat everything you want. Some treatments can be pretty rough and can affect your sense of taste for a long time.


Please feel free to ask questions. There is also the main pages of OCF which is full of important info.


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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may want to look at finding out if you have HPV, since your age and other risk factors seem minimal... but sometimes there is no known cause and it still happens. main thing is to face it and fight it head on. yes, getting angry is normal ... denial is normal ... they are all stages of dealing with something so traumatic. feel free to voice your worries here and let off steam when you need to - whatever it takes to get thru it wink we will be here to listen and help all we can.


Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.

===============================

"Those who think by the inch and speak by the yard, should be kicked by the foot."


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ACk. I am 23 and just finished treatments at the end of July for stage IV tongue cancer so I know exactly how you feel. I think Christine is talking about Hayley. We both have blogs that we keep updated if you want to check them out (they're a good way to keep family updated without having to make phone calls). Mine starts back at the beginning when I got my diagnosis. You definitely have the age advantage for getting through this! Keep us posted on all your tests and treatment plans. The people on here are great and are super helpful. You can private message or email me if you have any questions or care to vent. It's a lonely world out there being young with cancer sometimes.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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No one can answer why, but don't beat yourself up about the past! Stay positive - sounds like it has been caught very early and early detection equals a cure.

Many will tell you to make sure you get to a Comprehensive Cancer Center who will use a team approach to handle your cancer. I was diagnosed at 49 and can only IMAGINE how difficult it must be to say the words "23" and "cancer" in the same sentence. Yes it would be extremely normal to be angry and go through the "why me" stuff, but it won't help you move forward. Acknowledge the injustice of it all and focus on getting cured.

We are here for you and you will find such incredible support and experience here that you soon learn to post all your questions and fears. We understand and will assist where we can. Keep posting.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Shaylynn,

I am so sorry you have to deal with this when you are so young. Christine is right though that your youth may help you get through the treatments and recover more quickly. The other 23 year-old who posts here often (look for her posts under sobradley - you can find her posts by looking under the User List near the top of the page) should be really helpful for you. You'll know a lot more about what to expect once you get all of your initial tests.



Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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Shaylynn,
Glad you found this site. At this point it doesn't matter what caused your cancer, it is not your fault. Mine was caused by the HPV virus.

I too was scared and upset when diagnosed. It is very normal and understandable. Did your ENT refer you to a Comprehensive Cancer Center (CCC)? If not, I would recommend you get to one near your home for testing and treatment. Please keep us posted as you learn more. We'll be able to let you know more about what to expect once you are staged and a treatment plan is put in place. Hang in there.


Frank

SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
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Thank you all for your responses. I am glad to hear everyone says my age may help things!

My dr. Said to eat too. I just don't know what to eat.I eat 1 meal a day and I am alraedy obese! Yikes!

I am a huge blogger so that - know will help.I am so thankful I found this site!


*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!



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Eat everything that you have been avoiding because it was too "unhealthy." I can't even begin to tell you how many buttercream frosting cakes I consumed leading up to my surgery (they're my weakness). So, throw calories out the window and just eat whatever you want to!


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Shaylynn,

I would recommend eating food that is good for you to help build up your immune system as much as possible and I would also recommend getting your fill of your favorite foods. Depending on your treatment, food may not taste good for a while after you're finished so you should enjoy it now.

Is the ulcer on the front part of your tongue?


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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