| | Joined: Oct 2013 Posts: 24 Member | OP  Member
Joined: Oct 2013 Posts: 24 | The partial glossectomy turned into almost all of her oral tongue. Only saved a small section on the back left side. The tumor was much larger than we realized, about the size of an egg. She doesn't know the extent of the surgery yet. Absolutely devastating. I hate cancer.
Last edited by RebeccaH.; 11-18-2013 09:46 PM.
Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13
Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only)
Forearm flap reconstruction
Trache and NG feeding tube after surgery (both removed now)
Tumor 6.7 cm
All lymph nodes tested came back negative for cancer
Radiation- 30 treatments (ending 2/18/14)
3/20/14 Recurrence- tumors in both lungs; likely metastasis
| | | | | 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 | Im so sorry! Did the doc make a new tongue with a free flap (usually its tissue taken from the patients wrist)?
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: Oct 2013 Posts: 24 Member | | OP Member
Joined: Oct 2013 Posts: 24 | Yeah as best they could. It won't be very functional, just something there.
Last edited by RebeccaH.; 11-19-2013 08:55 AM.
Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13
Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only)
Forearm flap reconstruction
Trache and NG feeding tube after surgery (both removed now)
Tumor 6.7 cm
All lymph nodes tested came back negative for cancer
Radiation- 30 treatments (ending 2/18/14)
3/20/14 Recurrence- tumors in both lungs; likely metastasis
| | | | | 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 | A speech pathologist will be able to help your sister with her speech. It sounds like she has a long road ahead. I know another OC patient who was diagnosed at 17 years old. He went thru many major surgeries and went on to live a very good full life with getting married and having 2 wonderful children. Your sisters future may seem bleak right now but she is young and that is in her favor.
Your sister is lucky to have you with her. Make sure she is not in pain. Be her voice while she is in there. Watch the hospital staff to ensure they are doing everything they can to ensure her comfort.
Best wishes to your sister with her recovery.
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: 5,264 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 | Honestly - there is a woman here who had a total glossectomy a few years ago. She is completely healed - can speak on the phone, eat and taste. (apparently there are tastebuds all over your mouth not just your tongue) She works a normal job. I am not saying there will not be challenges but with perseverance she can get closer to normal than one might expect. Sometimes they tether the tongue to the floor of the mouth this can be adjusted later. The most important thing is she walks away from this alive. Please don't despair. How she does after all this is done depends on the reactions of those around her and most importantly her own desire to get back what she's lost. As long as she still has some of her tongue, there is the potential with therapy to recover a fair amount of what she has lost.
hugs
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: Jul 2013 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2013 Posts: 33 | Care and support from you and others close will provide an immeasurable difference in her recovery. Keep your and her chin up and we will keep you in our thoughts and prayers.
Male age 50 SCC BOT Stage IV HPV+ Tx 35xrad 3xchemo (cisplatin).
Tx completed 7/2013
MND 10/2013 (Pathology Negative)
Debridement for minor ORN 7/2014
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