#26804 10-13-2004 10:16 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Hi Lisa,
Welcome from another Lisa. Your story sounds similar to mine, my introduction was posted on April 30, 2003. I won't go into all the details again but if you do a search for posts in Introductions or Introduce Yourself from Lisa in Ks on April 30, 2003 you may be surprised! Please know that I am happy, healthy and doing great with a 25% glossectomy 18 months ago. My thoughts and prayers are with you and feel free to contact me privately by email if you wish.
Sincerely,
Lisa
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#26805 10-13-2004 11:05 AM | 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 | Lisa (Delaneli),
Welcome to the neighborhood. Sorry you had to find us but glad to have you here. As everyone is telling you, hit this thing hard the first time as you may not get a second chance. I had my primary site at the base of my tongue and was Stage IV. I did not have any surgery but did have chemo and radiation. I just passed my one year post treatment date and I am glad to have hit the beast hard even though I did not have the neck dissection.
Gather all the information you can. It will only help you in making the best decision possible in formulating your treatment plan. As people are telling you, do not worry about the side effects because having them are an indication you are still kicking. I am hoping the medical team you choose comes up with the best possible plan of attack for you to beat the beast.
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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#26806 10-13-2004 11:38 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Lisa,
Welcome to this site. I'm sorry you're faced with this diagnosis -- please feel free to visit this forum often to ask questions and get information.
The issue of whether to have radiation is influenced by the stage of the cancer and certain other characteristics that may be detected in the biopsy. My doctors strongly urged me to have radiation in addition to surgery (my tumor was Stage two), partly because the biopsy indicated the tumor was fairly aggressive. As some of the others here have said, this is a disease you have to go after with some really tough weapons, and it's really important to deal with a medical team that earns your confidence.
Please keep us updated as you go along -- we all want to provide whatever help we can.
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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#26807 10-13-2004 01:12 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Hello Lisa, WELCOME, you are the exact age I was when I diagnosed with CANCER. I beg of you to PLEASE stay on top of this. I know how over welming this all is. I will be praying for you and I wish you well......Miss Vicki | | |
#26808 10-13-2004 01:29 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hello Lisa
My husband also had base of tongue late stage, IV.
Our Docs suggested Chemo /Rad no surgery. Their way of thinking was, that can always be the next step in the arsenal. As Ed says , its a very tough treatment, we got through it and he has been finished treatment for 18 months.
We are here if you need us.
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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#26809 10-13-2004 01:38 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Lisa,
Dan was stage 2/3 and with the partial glossectomy that did modified neck dissections on both sides. We were told there was nothing found in the lymph nodes and didn't need radiation. Exactly 4 months later Dan develops a very agressive neck tumor, gets a radical neck dissection where they took about everything and couldn't get all the cancer (wrapped around carotid and jugular). This is so not to scare you because his was probably way more aggressive. My point is we were told no radiation needed and we found out only a few nodes were taken from each side. We were at a local hospital then and fortunately was at that point transferred to the University of Maryland Medical Center and have gotton very good treatment there. If I had found this board sooner or been at a comprehensive cancer center, I know that would have taken many more nodes and would have recommended heavily that Dan have rad after his initial partial glossectomy.
Hope this helps...just get more than one opinion from a CCC.
Take care,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#26810 10-13-2004 03:57 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | HI Lisa, a warm welcome. Like you I am a non-smoker and non-drinker but much elder than you are. It was a great blow to us when told that we had oral cancer, a cancer thought to be related to smoking and drinking. My primary cancer is in the tonsil. Although it was very advanced (stage 4B), I just had chemo and radiation without any surgery to beat my enemies. Your worry that without surgery, the cancer may come back, is understandable but I think your team of doctors are experienced enough to develop the best treatment plan for you. I always tell others to have trust with your doctors and get yourself open to others' advice and opinions. I am now 3 years post diagnosis and life is as normal as it can be. So don't worry and stay with us. You will certainly get enormous support from those in the same boat.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#26811 10-13-2004 11:30 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Hi Lisa,
Welcome to this wonderful site but I wish you didn't have to find us. I was diagnosed stage IV tongue cancer, had total glossectomy, neck dissection both sides (5 nodes positive), underwent 37 rad treatments combined with chemo and I'm coming up on my one year anniversary which is November 6! It's been one hell of a year but as you can see, treatments (whatever your doctors recommend) are doable. I've amazed myself (and my doctors) in that I'm able to speak pretty darn good and am eating solid foods. You're staging sounds as if it's not as severe as mine was but listen to your doctors advice and use everything you can to beat this the first time around. One of my regrets is not finding this site before or while I was undergoing treatments so I wasn't as well prepared as you will be in asking the right questions before deciding your treatment plan. Keep asking questions and someone here will have an answer. Keep us posted.
Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#26812 10-14-2004 05:34 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Lisa, I am thinking about you and praying for you, if you would like to email me, feel free. I could share my story of tongue cancer,if you would like. God Bless You!!!! Carol
Nancy, you are doing awesome, Congrats on your upcoming one year anniversary!!!!God Bless You!!!Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#26813 10-14-2004 09:17 AM | Joined: Mar 2004 Posts: 117 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 117 | Lisa,
I too am a non-smoking, light drinking female, diagnosed at age 41 with stage I tongue cancer. I had a partial glossectomy, about 25% of my tongue removed, and a modified neck dissection. They took out 48 lymph nodes and all were cancer free so I did not require more treatment. This cancer spreads through the lymph nodes so you make want to investigate an elective modified neck dissection. I had to do a lot of talking and a little crying, but my surgeon agreed to do it. It has given me piece of mind to know that I have minimized the chance that I'll have a metastisis.
E-mail me with any question you have.
Barb
SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
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