| Joined: Dec 2011 Posts: 18 Member | OP Member Joined: Dec 2011 Posts: 18 | Hi, I have been reading your posts for months now and finally decided to join you. I have found much informative information here that it was time for me to seek your wise advise on the next step of my treatment. I had surgery for oral cancer on 11/29/11. SCC floor of mouth, 2/3 of my tongue, 2 lymph nodes removed, teeth removed, and tracheostomy.I went 6 weeks of radiation. After all that I was informed that my insurance was all messed up so I could not seek any other treatment until I straighten everything out, which I did in June.My question now is that I want reconstructive surgery to build me a flap and get some more teeth. Righ now, whats left of my tongue is sewen down to the bottom of my mouth and my doctor is worried that he might do more harm than good. What would be my best choice in this matter. Thank You Sherry
Age 55 12/2011 SCC Floor of Mouth, Stage IV, Partial Glossectomy, Neck Lymph nodes removed 6 weeks radiation, Peg tube 2/15 recurrence, surgery set for June 9th. "Praying for the best" | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Go to a ccc and hopefully they have an ENT that specializes in plastic surgery they can likely do the job. My ENT is awesome but he had another surgeon with him - a plastics guy who did a great job rebuilding my tongue. Welcome and good luck.
Last edited by Cheryld; 08-31-2012 07:44 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | 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 | Sherry, welcome to OCF! So glad you have made yourself known so we can help you. For reconstructive surgeries after radiation, they may want you to wait for a full year before any surgery will be preformed. My doc said it takes a full year to recover from a major surgery and with having rads it is necessary. Any doc who jumps the gun on this may not be a wise choice. Also, many docs dont like to take over a case midway.
I would suggest finding a competent oral surgeon or ENT who does surgeries for oral cancer patients. Your best chance for this would be a cancer center.
Best wishes!!! 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: Dec 2011 Posts: 18 Member | OP Member Joined: Dec 2011 Posts: 18 | Hello and thank you for all your advise. I am currently going to Emory University Hospital in Atlanta.The surgeon that performed my initial surgery is in the same medical practice of my reconstruction surgeon, They have an excellent Otolaryngology center that specializises in cancer. I still have my peg tube and I try to relate to them that I need my teeth to really eat again. I'm 52 and weigh 105 lbs at 5,8. Its really hard to put on weight when all you can drink is ensure.I.m trying to be patient but its really hard.
Thank You Sherry
Age 55 12/2011 SCC Floor of Mouth, Stage IV, Partial Glossectomy, Neck Lymph nodes removed 6 weeks radiation, Peg tube 2/15 recurrence, surgery set for June 9th. "Praying for the best" | | | | 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 | Sherry, if you have been reading the forum for a while you probably know what I am about to tell you. Nutrition is very important and will help you with your recovery. You must get a minimum of 2500 calories and 48 oz of water every single day. Since you are so small, it would be a good idea to push yourself to get in at least 3000 calories a day. Adding some high protein powder will help with healing too. The better your nutrition, the faster you will recover.
I have no teeth at all. Dentures are not an option for me. This is something you will adapt to. I am able to eat a few items like yogurt, cream of wheat, cheesecake (only the very creamy kind), soup broth and a couple other things. Chocolate peanut butter milk shakes are high in calories about 2000 calories per shake. While I was recovering from chemo/rads I would drink 2 or sometimes even 3 of them and didnt gain an ounce. Thats due to my body working so hard to rebuild itself it burned up extra calories like crazy.
Choc-peanut butter milkshake recipe.... (all measurements are estimates as I dont measure when I make things)
3 or 4 cups chocolate ice cream 2 cups whole milk or half and half 1/3 cup peanut butter (smooth) 1/3 cup chocolate syrup a scoop of high protein whey powder a scoop of dry carnation chocolate breakfast drink
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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Hi Sherry
I suggest you see another Plastic Surgeon and Oral/Maxillofacial surgeon experienced with oral cancer patients. Depending on how much of your tongue and floor of your mouth is removed, depends on what can be rebuilt. After the floor of my mouth was removed, the reconstructed tongue flap acts as the tongue and floor of my mouth. Unlike those treated with a hemiglossectomy and/or partial glossectomy we no longer have a mobile tongue. The tongue flap is sewn down permanently. Back in 2008 a plastic surgeon and oral/maxillofacial surgeon rebuilt and reconstructed my lower mandible jaw. They removed 13 lower teeth. Since then they have rebuilt lower gums and inserted implants into my reconstruced lower jaw. The implants hold a titanium plate for a denture to clip on.
Please send me a PM is you have any questions.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Dec 2011 Posts: 18 Member | OP Member Joined: Dec 2011 Posts: 18 | Hello to All, Thanks Christine for your recipe. I have tried it and its quite tasty. I didn't know that plastic surgery was an option. I will call my dr. after the holidays and find out what he quite meant about more harm than good. I had a swallow test done last week and they say that I did excellent considering everything. I will let you know what he says.
Sherry
Age 55 12/2011 SCC Floor of Mouth, Stage IV, Partial Glossectomy, Neck Lymph nodes removed 6 weeks radiation, Peg tube 2/15 recurrence, surgery set for June 9th. "Praying for the best" | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I sure agree with Christine. I have no teeth either along with not much tongue . They also took my lower jawbone and I amd not a candidate for a replacement. So I live on whatever is in Isource. I drink much more than 48 oz pf water a day and it helps your body it seems. I have a lot of energy but a lot of pain too. Keep after whoever with questions . Good luck. My life line is a feedin tube like some others in the forums.
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
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