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#115137 04-07-2010 09:46 PM
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Hi, everyone i just stumbled onto this site (thank God),,i was diagnosed w/ scc on left lateral tongue 11/09 and had surgery on 12/03/09,,after 2 scrapes of my tongue the margins were clear and i went home dealt with the pain and began healing. Meanwhile i was so thankful that it was stage 1 and caught early because i have 3 young kids ages 10 and twin 8 yr olds. Now only 4 months later i have another suspicious area on the same side in which i am having a pet scan done 2maro. I am 35 yrs old and am so scared that if the cancer has come back this soon what is my prognosis and what do i tell my kids???

cookingmom418 #115139 04-07-2010 10:16 PM
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Cooking,

First I will tell you that I can relate to your situation. I was diagnosed 2 years ago at 33 with Stage 4 scc with two young boys to raise and it is a difficult situation.

The most common advice and probably most difficult to take, is to stay calm and realize that it's not cancer until biopsy says it is. Until you know for sure that you are facing a recurrance, let's try not to let the mind wonder as it can take you places emotionally that you shouldn't go to.

I'm glad that you've found this site, take comfort in the knowledge that you are among friends and people that can relate to where you've been and what you are experiencing. Where everyone's journey is different, there is comfort in commonalities.

My next bit of advice is a little easier to swallow then the first, but not as much. I would tell you to not get ahead of yourself and wait to see what the scan says...just take things one step at a time, it's much easier to tackle things as they come then to worry about the future and deal with the present.

We are here for you no matter what the situation.

Best Wishes

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 #115148 04-08-2010 05:40 AM
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First off don't assume this is cancer until at least the Pet results come back and then only another biopsy can confirm it. Even if it's cancer there are plenty things that can be done to kill or get rid of it.

Were you a tobacco user?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #115162 04-08-2010 09:05 AM
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Hello, welcome to OCF. Im so glad you have found this site. I was in your situation, twice. My children were older than yours, 15 and 17 the first time I went thru it. I had 2 recurrances, and luckily, Im still here to tell about it.

First, why are you having a PET scan for a suspicious area? A PET scan is a very expensive procedure that usually is done after a biopsy to help determine how advanced the cancer is. PET scans are notorious for lighting up for an inflamation and giving false positives. Do you know why your doctor isnt doing a biopsy? Thats the only way to tell if its really cancer.

I wouldnt tell the kids anything til I had a treatment plan in place. That is, IF it is cancer. Its not cancer til the biopsy says it is. There isnt any reason to get the kids scared at this point. They are young and already have gone thru it once, Im sure they would be terrifyed to know it may have come back.

Are you being treated at a cancer center? Thats where doctors all get together and go over your case and together come up with a treatment plan. Sure sounds like you got off pretty easy the first time around. I hope you never have to go thru chemo and radiation. Thats alot harder than recovering from surgery.

For tobacco users, they have a higher recurrance rate than HPV patients. I unfortunately was a stupid person and had smoked. I quit immediately after the OC diagnosis.

Please keep us posted. Wishing you the best.


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
davidcpa #115165 04-08-2010 09:30 AM
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Dear Cooking,
So glad you found this site. My mother is an OC patient and I have learned much from the people here and they are all so helpful with advice and most of all, support. You will feel like family here. I'm sorry you are having to deal with this again and will keep you in my prayers that it is NOT cancer this time but if it is, just take it one step at a time. Take care.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
Nancy T #115168 04-08-2010 09:50 AM
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Waiting to hear what you have found out since you first wrote. I think you have been given some great advice - take things one day at a time - do NOT get ahead of yourself. We all have enough to deal with each day. Catastrophic thinking does no one - ESPECIALLY YOU - any good at all.

I don't usually tell my children (who are older) anything much until I have some confirmed information. And, when / IF the time comes, you will find the strength and will to deal with treatments - but you need to do it ONE STEP AT A TIME. Breathe deeply - relax those shoulders, and go out and enjoy TODAY.

Hugs

Donna

Someone mentioned something about whether you were a tobacco user or not - some of us here were, some where not (HPV 16 or bloody back luck). If anyone asks you this question - it is not to be judgemental - it is that they are getting info on those who have an HPV connection.

I was a tobacco user - but obviously didn't quit in time to avoid cancer - or who knows why I got it?? Some doctors believe their is a difference in treatment based on cause, some don't - we all look forward to additional research on oral cancer.


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)
Pandora99 #115173 04-08-2010 10:23 AM
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Maybe you are like I am and the name they gave my OC is that it is unique. LOL Whatever that could possibly be. You have some good answers from some very intelligent Ocers. Good Luck and will watch for your posts..


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #115193 04-08-2010 05:29 PM
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Hoping its not a reoccurence, hard not to panic over it after everything you have already been through but try to stay calm. Welcome to our little group!


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 #115198 04-08-2010 06:03 PM
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Hello and welcome to OCF, sorry you have to be here. Take some deep breaths, think good thoughts......Hoping it turns out to be nothing! Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
Carol L #115208 04-08-2010 06:48 PM
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Wow thank you all for the words of wisdom and support,,i'm not sure why the petscan first they said they could get a better view of my neck since during the fist occurence i refused the neck dissection. I am also scheduled for a biopsy on my tongue on 4/16. But listening to all of your stories makes me feel like i can handle whatever it is and whatever treatment they tell me i need. I am a little worried about the fact that my current oncologist has not had many dealing with oc.

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