| Joined: Nov 2011 Posts: 3 Member | OP Member Joined: Nov 2011 Posts: 3 | I went to the doctor and heard worse news ever. They are going to have to take my entire tongue. Which means I won't be able to eat, talk or swallow. And anything that drops down my throat even saliva can fall into my lungs and cause pnumonia. Doctor said when they first do the surgery they will have to put a feeding tube in first. Because nothing can be taken by the mouth. My doctor is sending me to MD Anderson in Houston, Tx. 17 yrs ago I had TC twice in the same year and then had months of Radiation and then Implanted Radiation for 3 days. I have been told that I have had all the radiation my body can handle. Also due to losing my saliva 17 yrs ago I have since lost all my teeth and wear dentures but not too successfully.Also 2 yrs ago I had mouth cancer on my interior cheek. Now i'm scared to death. Is MD Anderson a good choice or the best choice of places to go for another opinion and for treatment. | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Hi Shera, Kudos to your doctor for recognizing a difficult case and sending you to a top notch facility. Please feel confident in the choice of MD Anderson. It is one of the very best.
I am sorry you are going from survivor back to patient. You have already been through a terrible ordeal because of oral cancer. I can only imagine how frightening it must be for you to be facing it again.
Did your doctor discuss with you tongue reconstruction procedures? There are people here on the OCF forum who have been through a glossectomy and reconstruction and are able to speak and eat quite well. Not only have they survived...they have triumphed over it. You sound like a fighter who is ready to step back into the ring again for another win. I have no doubt that you can do it.
Please keep us posted on what you find out from MD Anderson.
Take care,
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi shera welcome. Sorry about the recurrence but your dr. May have painted a bleaker picture than the reality - my dr. usually hits the worst case scenario first and works back from there because anything less is good news. Sandy is right there are a few people here who've had total glossectomies and are very very functional. Eating, talking, and taste are all things they can do. It wasn't an easy trip but they got through it. Regarding the radiation depending on where you had it the first time you may also get it again - MD will tell you for sure. And yes they do reconstruct tongues so hopefully this will be available to you. You said BOT cancer - Have them check you for HPV - and please try not to go crazy until you've seen MD Anderson.. They are one of the best... Good luck! And take care.
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: Nov 2011 Posts: 3 Member | OP Member Joined: Nov 2011 Posts: 3 | | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi Shera: MD Anderson is supposed to be the best. I don't know anything about your type cancer, but if you go to the top right of the Forum, and type Karen Rose in the Search box, I believe she is a survivor of that sort. I wish you the best of luck and I know others on the Forum who have more knowledge of your problem will be replying soon. God Bless. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | HPV is human papilloma virus MD Anderson is a top rated cancer center. 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 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | HPV is a virus, that can cause BOT cancer, responds very well to chemo and rads, talk to them at MD - good luck.
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
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