#29615 11-14-2007 04:55 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Carol, I know that it makes you feel better to have a game plan. Now just put it in His hands and let the doctors do their work.
The originator of this post, Carol, made it clear that she is a Christian. This post is a prime example of what Brian is talking about when he says that the method we've stuck to has worked. We should be very able to feel free to respond to a religious toned post with that same religious tone. I just noticed that it was Carol who started this post and now I'm stumped as to why anything was said at all! Now, if Carol hadn't mentioned God, I wouldn't either. That is the point Brian is trying to make................There shouldn't have been any issues from anyone concerning this post.
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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#29616 11-14-2007 04:56 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 | Carol, as stated to you earlier, your doc is one of the best out there, and you could not be in better hands. Like others, I want you to know that you will be in my thoughts, and I wish you the best possible outcome. I have seen many people who have had this procedure done with the same surgery, and I would not feel like you are going to become "the bride of Frankenstein". It never ceases to amaze me after the initial swelling goes down how good people look. I know that it sounds like it is very radical, but the end results (besides joy of being free of the cancer) are esthetically not something that you should be concerned with. I wish you a rapid journey through this part of things, and a quick return to health.
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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#29617 11-14-2007 05:10 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 | Minnie there wasnt any issue with Carols post! Billy just happened to mention he wasnt aware of the rules about religion in posts in his reply to her.
Anyway Carol i wish you all the very best for what is going to be a difficult time,and lets hope that like Minnie you dont have to go through as bad a scenario as you think.
You are in my thoughts
love liz
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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#29618 11-14-2007 06:13 PM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Everyone --
My response that included Brian's comments on religion from September 2006 came because of Billy's statement that he was unaware of any rules about referencing religion in posting. I remembered Brian's post and thought it was relevant to repeat it. It certainly was not directed at Carol, and I apologize if anyone felt that it was. That absolutely was not my intention!
Carol --
That's great that you have a plan. You will be in my thoughts and prayers in the days and weeks ahead.
All the best,
Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#29619 11-14-2007 07:21 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Carol,
I had the chin split and when you met me at the walk, did I look like the Bride of anyone but my husband???? Yeah, it's rough looking the first month or so, any invasive surgery is. BUT, before you know it the swelling and bruising goes down and you have to look hard to find a scar.
Don't fret on that part, trust me.
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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#29620 11-15-2007 09:04 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 | ..ahem.. Minnie, I believe you would now have to use "Bride of T-Dog" since we all know now anyway!!  I guess the cat's (I mean dog's) out of the bag now. Carol, best wishes always! 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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#29621 11-15-2007 09:40 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Carol,
1st off please know that I am thinking off you and wishiing you everything I have that you will again over come this disease !! And as every one has told me , when I went through my surgery and had all my fears..Beauty is on the inside, I have never seen your face Carol, but from your words I can tell you are a beautiful person.
And as far as all this religious talk. I am not religious either way and I don't take offense either. I don't believe strongly or NOT believe , I am not sure . But I def can see just from this thread the controversy it can cause when it is not even intended to. I don't think that Brian would ever intend to cause controversy in such a tender situation and I think we all just want the BEST for carol.
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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#29622 11-15-2007 09:57 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, when I met you, you looked beautiful, oh my gosh, I did not realize you had the chin split...thanks so much for sharing that with me! I had the petscan and catscan today...hoping everything is still as it was last night, with me having the surgery on the soft palete 12/14 and getting rid of the BEAST once again!!!Thank you alll so much for your good wishes, they mean a lot! Take Care......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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#29623 11-15-2007 11:05 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Again, thank you everyone.....I love all of 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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#29624 11-15-2007 05:14 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Ed.......you crack me up! Yes, I AM the Bride of T-Dawg for sure, and damned proud of it!!
Carol, if you go to the section of the site that is "Oral Cancer Events" and click on past events, you can see pictures of the walk. You can see how my face looked after the chin split, and that was 2 years after the surgery. But, trust me, it looks pretty good a few months after surgery.
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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