#6689 01-15-2006 02:38 PM | Joined: Jan 2006 Posts: 4 Member | OP Member Joined: Jan 2006 Posts: 4 | Hello everyone. My name is Melanie. I just found this website and registered. I am 33 years old and have had 2 cancer removals from the left side of my tongue since 2001. I have had an ongoing lesion of the left side of my tongue since approximately 1999. After my last surgery in 2004, I had hoped that the lesions would cease, but a new one developed over the past few months. I recently went to a hospital in TX and will now be in a clinical trial. I am hoping for some progress. I met a lady while I was there and she has had this condition for 30 years! I realized that I need to speak with more people and get involved in a support group. Before meeting her, I had never met anybody with tongue cancer. I hope to gain some insight from everyone here. I wish you all well.
Melanie
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#6690 01-15-2006 03:09 PM | Joined: Nov 2005 Posts: 105 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Nov 2005 Posts: 105 | Melanie,
Welcome to the site. I've been posting for only a few months and I've found this site to be both supportive and informative. There are a lot of great people involved with this forum. Good luck in your treatments. We're all behind you.
John
SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
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#6691 01-15-2006 03:25 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 | Melanie, not only will you gain insight, you will gain many friends and hopefully some comfort that you do not have to deal with this alone. Please keep posting and share what you are learning too. 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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#6692 01-16-2006 03:56 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Welcome Melanie... Good luck in Texas.. 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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#6693 01-16-2006 12:17 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hello Melanie and welcome. Lots of luck with the treatment, folks like you help make things better for everyone. Take Care Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#6694 01-16-2006 01:34 PM | Joined: Jan 2006 Posts: 4 Member | OP Member Joined: Jan 2006 Posts: 4 | Thank you everyone for responding and sharing with me. I really appreciate it! I do have a question and need some guidance... Since 2001 when I had my first cancer removal, I have never had a CT scan of my head/neck. The doctors have never done this (as I understand it) because my tongue cancer was only 2 millimeters deep so it is considered non-invasive. I keep feeling like I should have this done, but maybe I am just being paranoid. Is this something I should ask the doctor to do? I am concerned simply because I have had 2 cancer removals and an ongoing lesion. Thanks for your input!
Melanie
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#6695 01-17-2006 03:04 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Melanie,
Have you been to a major cancer center, or just a local hospital? In a situation such as yours, where you've dealt with this more than once, it's really important to get the advice and treatment from oncology professionals who know surgery, radiation and chemo. In the "Other Resources" section of this site, you can find a list of the comprehensive cancer centers around the country, in case you need to find a team of specialists who deal with tongue cancers on a regular basis.
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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#6696 01-17-2006 04:53 PM | Joined: Jan 2006 Posts: 4 Member | OP Member Joined: Jan 2006 Posts: 4 | Hi Cathy,
Thank you for your response! I recently went to a CCC in TX. I went to the head/kneck center and saw a surgeon and an oncologist. They both felt my neck for any lumps. They said a scan wasn't required, but if I wanted to have it done they would order it. I'm constantly going through wondering if cancer is somewhere else, as I am sure most everybody does. I want to have a scan done, but don't know if it is really necessary.
Melanie
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#6697 01-18-2006 11:19 AM | Joined: Jul 2005 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2005 Posts: 26 | best to err on the side of caution, especially if you've had multiple removals. i'd get the CT.
Diagnosed 6/05. Stage III SCC of the oral tongue. Nodes showed negative upon biopsy. 7/25/05 started Chemo of Cisplatin & Erbitux & 30 IMRT Sessions + daily Ethyol. 12/9/05, 75% hemi-glossectomy. Recovering since.
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#6698 01-18-2006 04:23 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Melanie,
Where are you going in Texas? There is a great ENT in Omaha that has even written a book about oral cancer. I can't remember his name, though.
Welcome to the neighborhood and certainly if you believe a scan would give you a little peace of mind, push them towards your goal.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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