#23539 06-24-2007 05:46 PM | Joined: Jun 2007 Posts: 1 Member | OP  Member
Joined: Jun 2007 Posts: 1 | Hi, I just joined the group to gain more information. I was diagnosed with a stage 4 tumor on the base of my tongue. The doctors are recommending a near total glossectomy with a neck dissection because of involvement in the lymph glands. They are also going to do a flap. I would appreciate anyone with kind of experience getting in touch with me and give me somewhat of an idea what I can expect.
Thanks, Tom | | |
#23540 06-24-2007 05:57 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | TOm
I had a partial glossectomy and a Modified Radical neck dissection, I was in the hospital for a week.
i can talk and eat ..not the same as before though. I have numbness of the left side from the ND . I am not sure about the flap as I do not have one , yet i am sure people will be able to answer that for you.
If you have any more or specific questions feel free to ask or email or Pm me I will answer the best I can
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#23541 06-24-2007 07:28 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | Hello and welcome Tom We are sorry to hear your diagnosis. This is a frightening and upsetting experience. You are not alone and this website will help you get through this. There are many knowledgeable, informing, caring and compassionate people here to help you. We have all been where you are and we will walk with you, and help in any way we can. Keep asking your questions and they will be answered by people who have fought and defeated this disease. Here is some helpful information about this website. There are 2 search engines on the OCF site. There is one at the top and one at the bottom of each page. Tom, this will help with terminology . Dictionary www.cancer.gov/dictionary www.ask.com Abbreviations http://web.utk.edu/~aalix/abbreviations.html At the top centers of this page click on the "faq" (frequently asked questions) Many questions about this site can be answered here. Everyone here wants to help you in your struggles. We will keep you thinking positive as we battle this defeat able disease together. If you have problems or questions about
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23542 06-24-2007 08:12 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | Tom, this will help with terminology.
There are 2 search engines on the OCF site. One at the top and one at the bottom of each page. Surf the site. It will help you learn all its functions and resources
I
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23543 06-25-2007 01:29 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Tom,
Tell us more about you and your cancer.
Are/were you a smoker, dipper and how much/long?
Are/were you a drinker and how much?
Age?
Have they told you how many nodes and which side?
What type of ND? Radical, partial?
Where are you being seen?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#23544 06-25-2007 05:20 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Hi Tom,
Are you working with a cancer center where a Surgeon, Radiation Oncologist (RO) and Medical Oncologists (MO) are all involved in recommending your course of treatment?
My husband's private practice ENT wanted to do a major surgery 2 days after the diagnosis. Then he wanted us to find our own RO and MO for follow up work.
We decided to get a second opinion. We went to a cancer center that has a head and neck specialty and we got a much different recommendation after his case was reviewed by the Tumor Board which did include the surgeon, RO, MO along with some other specialists.
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#23545 06-25-2007 03:32 PM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | I'm not familiar with Turlock, CA. I think you should get an 2nd opinion from a CCC in CA. My cancer was at BOT as well and I didn't have surgery. Regardless of where you decide to be treated you should get a couple of different options/opinions.
Tim
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#23546 06-25-2007 04:02 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Before you let someone do a life changing total glossectomy on you, I think you should go to UCSF and get a second opinion as to traetment options. As a stage four patient you should do this in the next day or two. Time is important right now, and your quality of life after treatment is important in the future. Most of the big ccc hospitals are using chemo and radiation to do base of tonge treatments, since surgery is so tough on what your life will be like afterwards. Getting an opinion from a multidiciplinary treatment facility near you ( I think UCSF is the closest) should be on your immediate to do list...this week.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#23547 06-26-2007 11:08 AM | Joined: Mar 2007 Posts: 163 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2007 Posts: 163 | Hello Tom
My Husband also had stage 4 base of tongue.
We chose, after much advice, to do Chemo and radiation... no surgery.
This was 4 years ago and his only problem now is a dry mouth.
Please do as you have been advised here... I would hate to see you lose your tongue unecessarily.
Marica
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
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