#66065 09-24-2007 11:18 AM | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP  "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Saw the oncologist surgeon today and found out that the cancer has recurred on what used to be the "good" side of my tongue. Surgery will occur between 2-4 weeks - need to coordinate with the plastics people. I'm coping. Wish I could say "I'm Okay", but for friends and family I feel I need to be stronger than I really am. This totally sucks. Surgeon says that the area this time is smaller, replacement tongue will likely come from my arm instead of my thigh, and that re-radiation and other decisions will be made as needed as we know more. I am working very hard on maintaining some sense of ?? sensibility?? and not totally Loosing It like I did when I was diagnosed before. They have given me morphine in pill form, so far it hasn't removed the pain entirely. I got back and see them again on Thursday.
Keep me in your prayers. Thanks to all.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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#66066 09-24-2007 12:51 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Donna, I am sorry to read about your recurrence on the good side of your tongue. That is what I always refer to mine as, too. You are in my thoughts and prayers, please let us know how things are going....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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#66067 09-24-2007 12:56 PM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Donna,
I am so sorry that you have to battle this beast twice. I agree with you, it does "totally suck". You will be in my thoughts and prayers as well.
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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#66068 09-24-2007 02:32 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Donna
SOOO SOOO sorry to hear..I cant even imagine hearing those words again ..Please know that you are in my heart and thoughts,,
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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#66069 09-24-2007 02:50 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 | Hi, Donna, just want you to remember that you are now a part of an incredibly strong group of people who have, or, at present, are facing this beast for another battle. Whether patient or caregiver, this was not a choice any of us wanted to face. But, the strenght, guts and sheer determination of the folks in this group is overwhelming. So gobble it up, internalize it and hold hands here. You are in the midst of company who care. Amy in the Ozarks
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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#66070 09-24-2007 04:06 PM | Joined: Jul 2005 Posts: 69 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 69 | Hi Donna,
You are definitely in my thoughts and prayers. I am still waiting for the pathology report from my biopsy last week. 2 times it has come back inconclusive but does show atypical cell dysplasia. I, too, never wanted to hear those words again but am gearing up for a second round. It is hard to stay "up" for family and friends (especially kids) mine are 22, 18 and 16 and very frightened right now. I'm taking my mind off of the waiting by concentrating on my classes (I just returned to college this fall after 25 years) I guess I thought it was "safe" to plan for the future. It's hard to stay positive, but try. At least you have a plan started and know somewhat the direction you are going in - you have something to focus on. Please know I'm thinking of you.
Pam
SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
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#66071 09-24-2007 10:22 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Donna,
You and I are walking the same road so we may as well enjoy each others company. On this thread, there are others along the road with us. Hey, let's call it the Yellow Brick Road! Ok, not so funny.
Seriously Donna, here is my outlook on it all. It is what it is. We can't change it, we can't hide from it, we have to face it squarely. It can be done, as has been proven by the many "two timers" on this board and we just have to set our minds to the fact that we will endure this and move on with our lives.
Let me know if I can help in any way.
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#66072 09-25-2007 12:58 AM | Joined: Jul 2005 Posts: 69 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 69 | Minnie,
Very wise words from a wise, brave woman. You're right, I've been telling myself the past several days - it is what it is - let's take care of it a 2nd time. I'm sorry you guys are on this road with me, but we can move on down it successfully, I believe. You too let me know if I can help.
Love,
Pam
SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
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#66073 09-25-2007 06:29 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 |
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#66074 09-26-2007 09:44 AM | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Donna,
I'm so so sorry to hear of your reoccurance. I recently had a total glossectomy March 2nd. I finished treatment in may and I'm doing well now.
It has ben difficult but I eat most everything and my speech is coming along. It has been a VERY difficult adjustment but I am at peace with how things have turned out. I hope that mine never comes back.
Your life will get better. the important thing is that they get all of the cancer OUT and you get the neccesary treatments to make sure it never ever comes back.
Hang in there and just put one foot in front of the other. I hope you aren't in too much pain.
Feel free to PM me if you have any questions.
Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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#66075 09-26-2007 01:42 PM | Joined: Sep 2007 Posts: 4 Member | | Member
Joined: Sep 2007 Posts: 4 | I just had the second third of the other side of my tongue removed. It happened so quickly - diagnosed one week and then surgery the next -and also the neck dissection. It's been a few weeks since surgery and I just can't get my energy back. I work in a call center only after a few months of being bumped out of twenty years working at Citigroup. I am trying to remain positive but feel sad and so, so tired all the time. I'm going to get my blood and thyroid tested but who knows why I'm so exhausted. I only wish you the best in your next endeavor. It seems that each person has wonderful underlying strengths that they didn't know were there. Let me know if you'd ever like to talk..
jj
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