#29107 05-30-2007 11:19 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | OP "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Hi again and thanks to all of you who've been supportive and helpful, even though was only in 'testing' stage. After being told yesterday there were no histology results yet because of holidays, so therefore not worth going for appt today, today went pear-shaped--yes, results, come in---then radiology dept rang--could I go for CT scan as well? Finally, after 2 pints barium meal and dye injection(why does no-one TELL you about those 'bits'???) and scan, went to clinic. Got out finally at 5.50p.m, after being greeted by surgeon, oncologist and 2 cancer nurses---told cancer is 'rare'--NOT parotid but from bone and muscle in jaw area--but, to my surprise, operable---okay, so 3 weeks hospital, lose half my face, jaw-bone, facial nerves, 1 salivary gland--permanent drooping eye and mouth etc.---then radiation Onc offered alternative of 3 rounds cisplatin plus aggressive radio, but all seemed to agree surgery was 'best' option. Spent evening ringing/emailing friends and relatives. Part relief at finally having 'diagnosis', more so at prospective end to pain which is driving me nuts, terror at thought of surgery and hospital for 3 weeks Oh, and does anyone know a good brown paper-bag supplier???????? To stop old ladies and small children fainting at the sight of me afterwards???? brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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#29108 05-30-2007 12:03 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Brenda, my heart goes out to you. I can only imagine how distraught you must be at the prospect of so much change in your appearance....and your life. But your life comes first......and I can promise you that you will adjust to your "new normal." And you will find blessings along the way. Please put aside the concerns about finding enough paper bags. Be yourself.....and "yourself" is not what you look like. Don't let this take away the "self" that everyone knows and loves. At the same time, of course it is only human to worry about the changes that this radical surgery will bring. Please stay close by this wonderful group, because they know the stumbling blocks that lie in the path of each of us.....
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#29109 05-30-2007 12:19 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 | Brenda, that is one hellish treatment plan! It will take alot of strength to get through it. Has there been any dialogue with a plastic surgeon during your doctor meetings? I sure would want some imput about reconstruction from one. We'll be pulling for you. 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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#29110 05-30-2007 04:15 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Dear Brenda
I will be praying for you. The number 1 concern should be very strong meds for your pain management now, and something to relax you. You have a lot on your plate,and you do not need to make these decisions in pain. Not in this day and age. You should have no pain!
God Bless You! Petey
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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#29111 05-30-2007 05:14 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Brenda......Amy's advice to include a plastic surgeon NOW in discussions makes really good sense. There would most likely be suggestions that he can make to the surgeon about how to make his work later more successful. And he might even want to be included in the original surgery for the best results.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#29112 05-30-2007 09:36 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | OP "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Thanks all! Yes, plasic surgery was definitely in the picture--the reconstruction is going to be done initially with tissue/muscle taken from my back, with an implant being considered later. The surgical nurse took a long time explaining that my initial appearance may well not be my final appearance. And am going to G.P. tomorrow for more pain meds and possibly anti-anxiety as well--can't see me even GETTING to the hospital without them. Also, both kids live away (Sue in CA, without a 'magic card') so need to keep reasonably positive and upbeat when on the phone with them. Am back at the hospital next week so can ask more questions then Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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#29113 05-31-2007 09:15 AM | 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 | Bren what happened to the e-mail you promised me once you had your diagnosis?Iknow you will need an ear and mine is available
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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#29114 05-31-2007 09:59 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | OP "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Liz---the rollercoaster has kicked in and still drawing breath! Didn't want to 'put-on' you---but will now---thanks! Momma--thanks for message! Bren
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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