#20609 07-02-2006 01:27 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | OP "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Hi everyone. My name is Wayne, and I underwent 17 hours of surgery three and a half weeks ago to treat a squamous cell carcinoma on my lower left jaw.
They resected about 30% of my jaw, did a bone graft from my left fibula, and a free flap transplant from my left forearm.
So far recovery is better than the doctors expected, and they have not decided for certain whether there will be follow up radiotherapy or not.
I'm having a tough time with things emotionally, and I sure hope to gain a lot of insight in this forum. I'm looking forward to participating Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#20610 07-02-2006 03:04 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Wayne,
Welcome to the OCF site. I'm glad you discovered it, and I know you'll find it to be a great source of support and information. Please check out (in addition to the forum) the many other resources you can see from the homepage.
Hopefully you'll hear soon from some others who have had surgeries similar to yours. We have a number of regular posters who have had grafts in the jaw area and can probably give you some good advice.
What kind of followup program are you on with your medical team? Are you able to get enough nutrition at this point?
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#20611 07-02-2006 04:33 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hi Wayne, Sounds like you are doing well physically as far as your Docs are concerned. The emotional part is really tough and we have learned that the Docs don't always do so well with that! So stick with us here and talk about your thoughts and concerns because I'll bet someone has experiences to share with you. Just remember, you are not alone in this. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#20612 07-02-2006 05:17 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | OP "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Thanks Cathy & Amy. I really hope that I can get the emotional side of things under control, and moving in the same direction as the physical.
I'm sure this forum is going to be a big enefit to me thanks again Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#20613 07-03-2006 12:54 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Wayne, don't be ashamed or too proud to ask for chemical help with your emotions. Better living through chemistry.... Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#20614 07-05-2006 03:07 AM | Joined: Jul 2006 Posts: 6 Member | Member Joined: Jul 2006 Posts: 6 | Wayne: I had nasopharyngeal cancer, which is a cancer of the nasal pharynx. I have a lot of trouble emotionally, and still do. I agree with Darrell -- don't be afraid to take antidepressants to help you through this. I don't like taking drugs of any kind, but I found they helped during my treatment. And allow yourself to have some "pity parties". Trying to be tough all the time is virtually impossible! I found that once I let it all out -- cried, screamed, etc. -- I was ready to get back on track the next day and fight this thing. Good luck!
Anne
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#20615 07-05-2006 06:17 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | OP "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | thanks everyone. I just found out today that I have to have radiation as well, 6 weeks of it, so that's just one more thing to fret about. I will be seeing the Doctor tomorrow about some medication to deal with the emotional side of things. Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#20616 07-07-2006 01:36 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | Hi Wayne, Good luck with the radiation treatments. As you no doubt have learned from others at the OCF, radiation is no walk in the park but is doable. Try to take a look at the OCF section on radiation at: http://www.oralcancerfoundation.org/facts/radiation.htm Also, do a search of the OCF board for "PEG" or "feeding tube" to read about others' experiences with and without a tube. I personally found it to be real lifesaver and wished I'd had it put in before my treatments started. Your mileage may vary. Since radiation will burn up your taste buds for a while, you should eat your favorite foods before the treatments begin, if your surgery permits you to do that. Best, Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#20617 07-07-2006 03:41 PM | Joined: Mar 2006 Posts: 99 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Mar 2006 Posts: 99 | Wayne, I am sorry to hear what you are goimg thru but you have found what will be your savoir thru this journey. There is everything you need to know about the radiation experience at your fingertips at OCF. My best advice to you is to start educating yourself now and you will be prepared for all. More importantly you will see that every little question you have will be answered here by caring people, alot of times better than they are answered by the doctors. I found that by the end of Stephens TX I was telling the NP some things (I learned here) that she didn't know and we are at the 4th best CCC in the country. We will all be here for you. Its a great place to be if you have to be here... All My Best Kerry
Kerry/wife of stephenm StageIV - Base of Tongue T4N0M0 XRT x42 / Taxol and Carboplatin x4 Tx. Finished 5/08/06
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#20618 07-19-2006 08:21 PM | Joined: Jan 2004 Posts: 16 Member | Member Joined: Jan 2004 Posts: 16 | Hi Wayne, Had very similar op to yours in Oct 2000 and still around to tell the story and support others. I decided against Radiotherapy as only one of 15 lymph nodes were cancerous. My bone came from my hip, and I eventually had titanium implants and these are absolutely brilliant. I eat normal, the scars are hardly noticeable. You can survive this ordeal !! Fell free to e-mail. T3N1M0 Lower left jaw Oct 2000. Male, now age 59, retired and trying to enjoy life | | |
#20619 07-24-2006 11:04 AM | Joined: Jun 2005 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2005 Posts: 72 | Hi Wayne - You are heading in the right direction. You've had the surgery, now you have a plan for the radiation. It is not easy - but you've got a lot of support right here. Please pass along this website to your family & friends. It helps. As my husband's caregiver, I found so much advice, hope and friendship during some very dark hours right here on this website. The road you are on is difficult - but you CAN make it. Depression has been a critical issue for my husband. He was so very relucant to admit he needed help with an 'emotional problem' - but I have to tell you that the anti-depressants saved his life. Seriously. It has been over a year since his diagnosis and we are 9 months out from treatment. Today he is doing very well and he is the very first to tell anyone to get help for the 'emotional problems'.
Visit here often - when ever you need a sounding board, or just need to complain. We are on this on this journey together and all are willing to help light up your path.
Hang in there - one day at a time. Carol
Carol R - caregiver to hubby Ken. Stage 4, SCC, BOT. 6/05 dx, 9/25/05 last tx, 5/06 stroke. Four years cancer free! Still taking things 1 day at a time.
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#20620 07-26-2006 08:13 AM | Joined: Apr 2006 Posts: 36 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2006 Posts: 36 | Hi Wayne, I had my surgery at the beginning of last December. Mine was similar to yours, though no bone graft. Physically I recovered much like you. Way ahead of Dr's expectations. I refused to be bed riden, or even dependant on anyone for any length of time. Just me being a stubborn old redneck.
I did have alot of issues as far as my emotions. I was never one to let mine be known. And I hid them quite well.I was aware that people now looked at me differently. I even noticed my kids stares from time to time. But I got past my vanity, which I never thought myself to be vain. One cannot worry what others think. I have a very noticable scar and a bulge when the flap is. I have not decided yet, but am leaning towards not doing platic surgery to remove excess. Feeling is slowing returning to parts of my cheek and I just don't know if I need the surgery. Plus, I have a program starting up that takes me to schools, churches, outdoor events and more to talk to people about dipping. he image of me they see makes a more profound impact. I never had to have radiation as all 37 of my nodes were clean. So I cannot begin to tell you anything on that front. Hang out here and chat with people. I have neglected to do that, and I have missed out. But always keep a positive outlook on this. I wish you all the best. God bless, Curtis
The Outdoor Texan
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#20621 08-03-2006 01:06 AM | Joined: Aug 2006 Posts: 5 Member | Member Joined: Aug 2006 Posts: 5 | Wayne, I too had the mandible resected and replaced with the fibula age 44. Honestly, the leg was the most painful part of the procedure, which lasted like you 17 hours. I had the procedure 5 years ago, and today can eat anything. Except for the dry mouth, I do not have major problems. I coach a boys U14 soccer team, and practice with them twice a week. I was back to work about 6 months after surgery, or about 2 1/2 months after chemo/radiation treatments.
You have had a very difficult time and you can flourish down the road. Nutrition is key. I made it through with enriched milk shakes and cocoa wheats cereal.
I was emotionally wrecked after surgery, as my speech was very much affected. In my profession I made numerous speeches and presentations, especially at national and international seminars and professional meetings. I thought I would never be able to return, but with the encouragement of my doctors I am back to doing everything I used to do. I am not the same, just a different normal now. That was a realization I had to accept. You will forever be changed, but you are the same person. Best of luck to you. I will watch this posting. | | |
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