#20685 07-13-2006 02:16 PM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: Jul 2006 Posts: 109 | Joy, im a patient at MDACC right now, and i can tell you that Dannny is right, you do have to be very patient, but i also know im very lucky to have these doctors here. if i can help you in anyway please let me know. do you have someone that will be coming with you? trust me, you have made the correct choice in coming here. good luck and let me know if i can help. linda | | |
#20686 07-13-2006 03:49 PM | Joined: Jun 2005 Posts: 81 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jun 2005 Posts: 81 | Joy,
I initially had similar SCC to yours in 2003 except mine was moderately differentiated. I went to a cancer hospital but the only option I was given was a patrial glossectomy. I wasn't smart enough at the time about cancer to ask more intelligent questions. I had a 25% removal in Nov 03 with no node involvement and had no problems with speech or eating afterwards. Got a clean bill of health on Dec 1, 2003. However I had no radiation offerred and right around Christmas 03, I had a recurrence that grew so quickly that I had to have a near total glossectomy in early Feb 04 with all the attendant speech and eating issues that are ongoing. Perhaps radiation would have prevented the recurrence. I'll never know but I want you to have the advantage of my experience. Radiation isn't fun but the loss of a tongue is far worse. Take it from me. Good luck
Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies | | |
#20687 07-13-2006 03:49 PM | Joined: Jun 2005 Posts: 81 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jun 2005 Posts: 81 | Sorry I can't delete a inadvetant dual post. | | |
#20688 07-13-2006 08:14 PM | Joined: Jul 2006 Posts: 16 Member | | OP Member
Joined: Jul 2006 Posts: 16 | Thanks, Danny, Linda, and Jim. Sounds like MDACC is somewhat typical of a large institution insofar as lack of communication. I'll keep that in mind, and my husband has no problem being a "squeaky wheel" even if I am not able. Linda, my husband will be coming with me, but I will definitely get in touch if I have more questions. Jim, I am so sorry about your experience, but I appreciate your sharing it and I agree, I sure don't want to take a chance on a total glossectomy.
Thanks,
Joy
8/2006: SCC, right lateral tongue, well differentiated, superficially invasive. 10/2009: recurrence, rt lateral tongue, surgery, rt mod neck dissection. 2/2010: metastasized node under left mandible. 3/2010: Induction chemo 3 rounds, Cisplatin, Tax, 5-FU. Surg and rad to follow.
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