| | Joined: Nov 2008 Posts: 4 Member | | Member
Joined: Nov 2008 Posts: 4 | My first time here so I guess I better introduce my self. I'm 52 years old and have been treated for SCC 3 times: 1993, 2007 and 2010. The first time there was an ulcer on the front right side of my tongue. It was removed and I had RAD to supplement. I was clean for 13 years. This last time was the worst. The cancer was misdiagnosed by two dentists and an ENT as TMJ. Mainly because I had a lot of jaw pain but no visible tumors. This went on for 5 months before a clearly visible tumor showed up on my tonsils. It turns out the cancer this time had started at the base of my tongue. As a result, I've lost most of my tongue, which was replaced with a micro flap from my left arm. I can still speak, but not very well. And I'm learning to swallow water again. I have a PEG and use that for all my nutrition. I had both Chemo and RAD, which did not go well; it put me in the hospital for a few days because I couldn't keep anything down. During all this I lost 40 pounds. I'm now at home recuperating and feeling a lot better. Getting stronger everyday. I was a software trainer before and have lost my job. I'm now on Disability but looking to get back into the workforce someday. So I'm in the process of trying to get re-trained in another area of the computer industry so I can get back to work. Nice to meet you all. Thanks!
Woody57
SCC, Stage III, BOT, Glossectomy/Chemo/RAD/PEG. Surgery: 1993, 2007, 2010. Non-smoker, non-drinker.
Never quit, never give up, never surrender.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome Woody!
Very glad that you've found our little corner of the internet! Wow, a 3 time survivor of almost 20 years...that's impressive! Good to meet you, looking forward to getting to know more!
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: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Welcome Woody, gosh you have had a time of it, too. I am a 3 time survivor so far, waiting for biopsy results again. And I can tell you that I am afraid.
Thank you for posting, it is good to hear from someone who has survived it 3 times and for so long!
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 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Woody, welcome glad to know you. Man... you've been through it! Your spirit is amazing though. So glad to read of the 13 years. You'll get several times that number more, I'm sure!
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
| | | | | Joined: Nov 2010 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 33 | Hi Woody and everyone. THis is my first time here as well. My huband was diagnosed with Stage IVa cancer of his tonsil with two lymph nodes in July of 09. He had 39 Radiation Treatments as well as Chemo with a neck disection in January 2010. He went back to work in April and felt great. A couple of months ago, he developed and ulcer in the back of his throat. HE had a surgical Biopsy done yesterday and we are supposed to get the results tomorrow. The doctor seemed pretty certain that this is cancer. It's on his tonsil again and on the base of the tongue. We are both pretty freaked out about this. His doctor told me (not him yet) that the opening of his mouth is so small that she may have to crack the jaw in order to get in there. Anyone know anything about this???
CG of Mike, 43 y/o. July 2009 with Stage 4a SCC on Tonsil., Nov.2010 Recurrence on Tonsil and Base of Tongue
Surgery no clear margins. Very Invasive.Palliative chemo
7/2011: Cancer not responding to chemo, new tumor on larynx and a few other places in oropharynx
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Hi Woody. Welcome to OCF. Im another 3 time survivor. My bad years were 2007, 2008 and 2009. Im happy to see another 3 timer here. It gives us all hope. I know things arent the best right now. With lots of patience and therapy things will improve.
Dorety, welcome to OCF. Where in PA are you? Im in the Allentown area, there are several of us in the eastern part of PA. If (and Im saying IF) the cancer has returned then its a good idea to go for a second opinion. I did see your other post under "Recurrance". Please start your own post here under "Introduce Yourself" so that we can get to know you and Woody (original poster) individually. I know waiting can let your mind go crazy with the 'what if's' but it will not change the results or make them come back any sooner. Best of luck tomorrow.
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 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | welcome and hope you continue to heal and get stronger! Hope 3 times the charm and it doesn't come back again!!
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
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