#96666 06-04-2009 01:23 AM | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jun 2009 Posts: 138 | Hi, I just got the results of a biopsy done by an oral surgeon of a tumor under my tongue. It is squamous cell carcinoma and apparently it has been there for some time. The oral surgeon just happened to notice it by touch. I am going to an ear, nose and throat specialist next and am scared to death. I have family around, but none has ever had cancer so I don't feel they understand fully my panic. I hope I can make friends here.
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
| | | | | 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. You came to the right place for support. Its a very frightening time when you first get that awful diagnosis. You are correct with seeing an ENT. You should go to a cancer center to get a group of doctors who specialize in cancer treatment. Second or even third opinions are important to help you determine what is the best course of action for you. Its your decision.
Im hoping your family becomes more supportive. You will need them and the help of everyone around to get thru this. Its not just physical its also emotional support which is important. Many patients take anti depressants to help them cope with this. You need to understand you are NOT alone. Many people here have been right in your situation, scare and not knowing what to expect. We will help you thru this.
Right now, try to eat everything! Anything you want and dont worry about gaining weight. Eat like crazy cuz it could be a while before you eat properly again.
Please feel free to ask questions. Best of luck.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I was right were you just one month ago when I got the phone call. It is such a frightening thing to hear. This place is so awesome and ready to answer any questions. I am glad your oral surgeon did a biopsy. I know the fear that you have and you will need support through this. I pray that you will get that family support you need as this is a very rough time. I also pray that you have not had it for very long, and will only need surgery and nothing else. We are here for you.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | 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 | Bloop, I would recommend that you seek the advice of a Comprehensive Cancer Center that sees 100's and 100's of patients just like you vs an ENT that maybe will see 5 a year. Here is a list: http://www.oralcancerfoundation.org/resources/cancer_centers.htmI got 5 different opinions before I settled on Moffitt, a CCC and I am very glad I did. If I had stopped to soon in seeking answers I would either be dead today or would have had unnecessary life altering surgery. Your cancer is nothing to take lightly and it needs to be treated properly the first time by experts who deal with this cancer all day long, every day, year end, year out. I'm not criticizing your decision to see an ENT, I'm just trying to get you to the correct location to get the best possible treatment. Please keep us posted. This site will prove to be the most valuable tool in your arsenal outside of your Tx. We will be here for you all the way.
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: Oct 2008 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 49 | Hi Bloop,
My husband discovered his cancer through an ENT who referred us to several cancer centers. ENT's see this all the time...they have a wealth of info available to you and the first one that we saw was worth his weight in gold. His positive attitude got us through this and assisted in obtaining the specialist that my husband needed to do the final surgery after treatment to remove residual disease.
Hope this helps!
Donna
Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
| | | | | 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 | An ENT is a very important part of your treatment team. They are ear, nose and throat specialists, some of them are also surgeons. I see mine every 2 months still where the oncologists are only seeing me every 6 months. It can get confusing on who to go to for which issue. My ENT is who oversees my treatments. He is an excellent doctor and has treated a few others on this board as well. Without him, I probably wouldnt be here today. He found my recurrance immediately and got it taken care of within a few days of confirming it was cancer.
You will still want to go to a cancer center to get a whole team to work on your individual case. There will be a medical oncologist (chemo doc) and radiation oncologist. Its very important to get everyone on the same page and get you fixed up with the best possible treatment plan.
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: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | I was at work when Martin called and told me the swelling in his neck was cancer. I had the biggest sinking feeling in my heart ever. We had lots of support, but I must hear this site was a life saver and kept me sane. I never felt alone here.
All the best
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Welcome to the forum. It's impossible to not be afraid but, don't panic. You can beat this thing. Best of luck and please keep us posted.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Welcome to OCF and good luck, try and get treated at CCC. I agree with David they are the best equipped to help you in this WAR you have entered. GOD Speed and the best. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Welcome and as you can see you have lot's of friends already.
Mine was floor of mouth as well... nearly 3 years ago and doing OK.
Ask as many questions as you like and they will be answered by very experienced people here.
Keep us up to date and try to take the advise from David R..don't panic
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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