#94029 04-21-2009 07:05 PM | Joined: Apr 2009 Posts: 1 Member | OP  Member
Joined: Apr 2009 Posts: 1 | Just got results of biopsy today. I am in the early stages of tongue cancer. Still in shock. Went for a cat scan to see if it has spread to neck. Doctor has scheduled surgery for early June. Very scared. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. Its ok to be scared, this is a very traumatic time for you right now. Im glad you found this forum to help you thru your battle. I found it also right after my initial diagnosis. Please feel free to ask lots of questions about anything you arent sure about. You will learn a whole new vocabulary and be fluent in medical terms very soon. Have you thought about getting a second opinion? Are you being treated at a comprehensive cancer center?
A couple pointers to help make things a little easier for both you and also us. Please try to update your profile with info so when you ask a question we can answer it easier. When you go to medical appointments dont go alone, take a notepad to write down your questions and their answers and a calendar to write down info and future appointments. You will be running around alot and its not always easy to remember all the appointments and different doctors.
If you can eat a normal diet, go for it! Eat as much as you can right now and dont worry about weight gain. It could be a while after your treatment starts before you can eat normally so eat now.
Best of luck with your upcoming treatments.
ChristineSCC 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  | | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi there- I remember the first few days after getting the intital biopsy result and all the Drs. appts and scans. It is very upsetting. Its very very frightening. Just try to remain calm be sure to eat and if you are having trouble eating please drink lots of fluids and nutritional drinks. The worse your nutrition is the worse you will feel. The stronger your body is going in the better you will deal with the treatments you will get. Pretend like you are gearing up for battle.
We are here for you. This has been a wonderful resource for me for information and just to have people I can relate to who are having to deal with this situation.
Get lots of rest and surround yourself with a good support system.
Thinking of you!
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | HI and welcome to OCF
just wanted to chip in and ask why so long to wait for surgery?
liz
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.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | What type of surgery?
And I echo Liz' comment about waiting till June for the surgery.
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.
| | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | Hi Kloeb!
Welcome! I was in total shock with my diagnosis as well. I had an ulcer on my tongue for several months before the doctors correctly diagnosed me with Cancer. I honestly feel that the hardest part was the unknown. Not knowing why and what was in store for me. I canm promise you one thing...it will be a very scary rollercoaster...but these people on this site are loving & caring & will help you through it all!
Good luck!
*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!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | THese are all good advisers. It seems I had each one when I 1st came to the forums. Just don't rty to be superlady and heed the advice you get here. We all care about you very much and want you to beat this stuff. One thing for sure, eat eat amd then eat more because the weight will come off and be hard to put back on. I lost 70 and am still down 60 after going on 2 yrs.Enjoy the steaks , pork chops, bacon, chicken and everything you like that has to be chewed and enjoyed. LOL My best now is a pancake with good syrup, butter and topped with a poached egg. It all tastes the same so you use your imagination and pretend.
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
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | All due respect to Misskate but there is no pretend about it. You ARE gearing up for battle. Welcome to OCF and get out there and kick cancer's butt.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | If you aren't being seen at a Comprehensive Cancer Center, we strongly advise that you do so. Basically, your case will go before a Tumor Board of experts in their fields of surgery, chemo and radiation, and will make recommendations as to the best course of treatment for YOUR case. Even if you prefer to remain with a lone practitioner, get a second opinion from a CCC -- They will see more cases in a year than a lone practitioner will see in a lifetime and they stay very up-to-date. Here's a list: http://www.oralcancerfoundation.org/resources/cancer_centers.htm I am not encouraged by waiting until June to do the surgery; sooner is better to keep it from spreading.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | That first diagnosis is the hardest to get, but this is the best place to be to support you through this battle.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
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