| | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Lisa,
Once you get that "C" diagnosis, worry and stress are a part of your life. I had a recurrence a year ago which really added to my high anxiety level.
Have you gone for a second opinion? I saw 3 surgeons last year and got 4 different treatment options ranging from minor surgery to major surgery. Then it was up to me to decide what was the best treatment plan for me.
We are here for you!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Oh Lisa, my heart goes out to you. I have had it several times and got news yesterday that I have it again in my jaw. I don't have anything good to say but know we are all here for you and the people here are good people, so keep coming back. My thoughts are with you!
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---
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | My heart goes out to you Lisa and you too Carol. You are both strong beautiful ladies inside and out who will fight through these treatments. I know recovery and rehab will be tough but I am praying that you both will pull through and beat this thing once and for all.
Sending love and strength to you both. I wish you both were not having to deal with this awful thing. I hope I can be a support to you.
Love and Kisses,
Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I can only echo everything Kate has written Lisa and Carol.
I will be thinking of you both.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Lisa:
I can't add much that hasn't already been said except lot's of Thoughts, love, hope, prayers coming your way! Deb said it well, stand up tall and fight with every ounce of passion you have! I agree with you, no parent should outlive their children so JUST DON"T ALLOW IT... We're all here for you!
Warmest Regards,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Apr 2010 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2010 Posts: 27 | I will have the biopsy results tomorrow. Today was a rough one, literally was awake all night until I finally got up and got dressed to go to work. No sleep and what turned out to be a 10 hour day was probably not very smart. All I want to do is go to bed and cry
Lisa from Montana
40 years old
squamous cell-left lateral tongue & lymph with free flap skin graft and re-section,
PEG tube,
Total Glossectomy without Laryngotomy April 2011
Still mouthy as hell
plenty of war wounds
craving a cheeseburger
***10/14/11 UPDATE--Lisa has passed away
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Lisa,
I can, in no way, compare my experience as a caregiver to what you are currently facing. But I do know this:
When you are sleep deprived everything seems insurmountable. You have got to get some sleep somehow to have the will to fight and heal as well as have mental stability. I know you know this but sometimes I would feel so defeated and then realized that I had not slept well or it was late and I just needed to go to bed.
Hugs again,
Deb
Last edited by debandbill; 01-06-2011 07:53 PM. Reason: typo
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Dec 2010 Posts: 14 Member | | Member
Joined: Dec 2010 Posts: 14 | Lisa, I wish I was in Montana right now to give you a big hug! I'm so sorry you have to go throught this again. I am also so sick of people telling me to stay positive. I realize they mean well, but sometimes it's hard and I just want someone to hug me and tell me it's ok to feel like crap. I'm pretty new to the cancer world and I friggin hate it. I saw one person write one time that they wouldn't change what they went through for anything because it made them a better person. I say B.S. if I had a choice I would change it in a second, I'm a good person without cancer. I hope things turn out GREAT for you!!! Shelly
43,T1N0M0
Mucoepidermoid Carcinoma Int/high
9/10-1st surgery
10/13/10-2nd surg,UCSF Dr.Eisele rmv tumor,L floor mouth excised, muscle moved under chin,skin graft L thigh to cover. Neck disct 16 nodes
11/29/10-IMRT 30under chin
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | I'm sorry for having to go thru this...but I have a question, is everybody or anybody mute from this? silenced forever? sure don't sound like it to me thru all these postings, so please don't think of it that way if this is going to be you're way of life after surgery. because you can still get your point(s) accross without speaking them verbally! and i would really like to know is everybody silenced through the surgeries they've had? Ron has had more than half his tongue removed, his voicebox is still intact(i understand if you had cancer in your voicebox you can not speak without a machine right?) but he can talk and bitch at me with no problem! he may not be able to pronounce certain letters but I and everybody he speaks to can understand him just fine. so I don't think you would be considered a mute from removal and transplant of a flap right? just one of those questions I have never seen really answered on how well everybody can speak, alot of you have even gone back to work so I can't see muteness here.
Good Luck and keep postive is that OK to say?
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | My speech is OK sometimes, and other times not so much. I notice that if I am tired my speech is worse - it's almost like a lisp. Also, when I am out in the dry air it seems to effect my speech as well. I have been back to work since November of 2009, and I communicate pretty well. Sometimes talking on the phone can be a problem.
I do agree with espressochick's observations. I friggin' hate my cancer, too! I had someone say that they looked upon their cancer as an adventure, but I look at it as a pain in the you know what!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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