| | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Barb,
In May of '08, I had the surgery that you'll be having. After about a week, the swelling went down enough for me to put my lips together and from then on, my speech was intelligible. It was another week or more before I could put my teeth together though.
Today, almost two years out from surgery, no one that meets me now has any idea that about 1/3 of my tongue is made from my wrist, and with a new career in sales, I meet new people every week. I believe what 'saved' me is my surgeon was able to leave the tip of my tongue so speaking is roughly the same as it ever was. That said, the radiation/chemotherapy did leave me with a drier mouth, eating is still a challenge and I have to be ever diligent about recurrence, mouth care, etc.
I guess the gist of my post is, you can't predict what's going to happen or what your body will be, do eat your favorite foods as you are able and just focus on one day at a time.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | 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 surgery are they proposing? I forgot?
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Margaret, maybe that is part of my speech problem They took the tip of my tongue for my last biopsy a few months ago. It didn't shut me up tho. LOL
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: Mar 2010 Posts: 4 "OCF Canuck" Member | | "OCF Canuck" Member
Joined: Mar 2010 Posts: 4 | Hey Barb,
I remember the day over 10 years ago, when I was diagnosed with stage 4, squamous cell carcinoma. I asked the surgeon how long I had. He laughed and said,"We don't talk like that any more. The time you have left will depend on you as much as your oncological team."
He coached me on staying positive and I can't tell you how important that is. There may be times when you despair but keep in touch with us and your family and friends.
Incidently, I was also a heavy smoker and have only recently been able to quit, thanks to a miracle drug called Champix in Canada and Chantix elsewhere. Chin up, good fortune and call if you need any support, advise or info.
PS I was 53 when diagnosed, I'm 64 now.
Life is what occurs while we are making other plans!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You sure have that right about the positive attitude. I was given up fpr dying a couple of times but told my Dra now way was I gonna die,. I had the positive attitude, exercised and worked outside my home and inside if the weather was bad, was my own caregiver and here I be. LOL Still smiling and enjoying life. I had an aneurysm repaired 1 yr ago , but only half way but I do 100 to 200 reps a day with my arms. I feelke a kid and am 74. Good advice serfivr.
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | That's great! I'm a firm believer in that if you quit doing things, the less you are able to do. Keep up the good work.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
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