| | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Found out today that the biopsy came back positive for squamous cell c. It is a tumor on top of my jaw. This is my 6th experience with oral cancer....I think I am still numb from the news but sort of expected it. Doc talked about removing part of my jaw and using bone from my leg to replace jaw, etc...cat scans and mri's to be done Friday after next, then decision on surgery date, etc....I asked my doctor why I keep getting oral cancer, he said he has about 2000 patients and of those about 20 female including me have had new primaries after initial, most are older than me (53). He said they don't smoke or drink....If anyone on here has had jaw surgery or part of your jaw removed, please write to me......Thanks!
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---
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Carol,
Well my dear I'm very sorry to hear about the news. I think ChristineB is probably the best person to talk to, although there are several of us that have had the mandiblectomy w/fibular free flap. She's had multiple recurrences and the mandiblectomy to boot...and she's still living life, kicking butt and taking names to boot!
What I will say is the surgery is rough so make sure you get the finest care available to you. What I will say is that it is very possible to have the surgery and live a completely normal and great life afterwards, even if you have complications.
I love my life and am thankful that I had a great team that put me back together again.
Keep your chin up my dear
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.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | This totally sucks Carol. If I have to find a bright spot it is that you "keep on keeping on". You get diagnosed, deal with it, and then you move on and continue living your life in an exemplary manner. For some, oral cancer is a chronic disease.
"But why ME" must be going through your head over and over upon finding out you are part of an elite group of 20 - seeing as it is a club you really don't want to be part of. This sucks. No two ways about it - but as Eric said - Christine will be one of the best ones to give you advice on the surgery itself, and more importantly I remember how dismayed, discouraged, and disheartened she was with her last diagnosis and I think THIS is special hand she can lend you right now. She's been there.
Having said that, we are all here for you. You will not walk this path alone. Keep posting and I'm sure others will chime in.
Many hugs
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)
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | All I have to say is this sucks. I also ditto what everyone else has sid. Christine would e the best person for you right now. I so however undersstand about being in an elite club. I went to HBO today and asked some questions that my Dr. could not answer, because most of her patients for HBO are in there 60's/ She said that she has only had a few people as young as me in the chamber. Anyway, you are tough, and will beat this thing again. You have beaten 5 tims already and you can beat it again. We are here for you. Vent away.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Carol,
So sorry to hear this news. Life just isn't fair at times. I will keep you in my prayers. You are in the right place for advice and support. Stay strong!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | 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 | Carol, all I can say is Im floored!!!! We talked about this so many times on FB. I know how scared you were and that you 'knew' it was back. I am so sorry!!!!! Once you get the initial shock out of your system we can better discuss what will happen. Its not easy but you are a fighter just like me and can do this. You gotta do it, we still have to meet up in the summertime, right???? You are young and will get thru it and move on. If you look at some of my recent posts, its been to a few people who are going thru the same type of jaw surgery. Seems like there were only a few who had this done when I went thru it. Since that time, there must be at least 10 members who have been thru it. I know you are a little lady so try your best to bulk up. Did you ever get that protein powder we talked about? If not please get some and start using it. You want to be strong going into this. I know you hate ensure but you really have to get a balanced diet with extra calories right now. Dont worry sweetie!!!! Im here for you thru thick or thin  Love ya!!!!
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Carol,
I am so sorry that you have to go through this again! I think Christine covered it all. You are in my thoughts and I wish you a speedy recovery. Hang in there!
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thank you all so much, I think it is still sinking in. I totally appreciate the support as you have given me in the past. @Christine, I found a powder to put in a shake, hoping that helps since I really do not feel like eating. Love to all!
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---
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | I had cancer surgery last April and doctor couldn't get it all, so I had two surgeries with the robot at Univ. of Md. and it did get it. Why it keeps coming back I do not know. I did have a good 5 year run from the initial tongue surgery and radiation in May 2002, so that was good. Then Soft palate cancer in 11/2007, I don't want to scare anyone on here. sorry if I did. Getting it once is bad enough and I am sorry to all that have had it.
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---
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Carol, shit... I'm so sorry to read this. You deserve better, but you sound like a real fighter, strong and determined. My thoughts are with you.
David 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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