#5296 04-25-2005 03:51 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi everyone, I really need a shoulder to lean on right now. I know my life has been busy but I am a bit troubled. I have neglected so many of you and I apologize for that. Tomorrow morning I go to the doctor and for once, I am happy to say I had a PET/Ct a couple of weeks ago on the insistence of my medical oncologist and all came back clear!  For once, I can go see Mr. Pokey without the usual pre-visit fears and jitters, or so it seems. To add a little stres, my doctor is moving back to Tennessee next week and this is my last visit with him. The real kicker, though...(the drum roll please) is that tomorrow I have a "double appointment" with Susan going along to see my otolaryngologist. She has been seeing her ENT for a few weeks now and as we see many more lumps protruding all over her neck and the mass on her eppiglotis growing, we can't help but be a bit scared that the ENT is mising something. He ordered a Ct, knowing she was allergic to the contrast but now we find it impossible to get a PET/Ct done without a positive diagnosis of cancer. Susan is scheduled for surgery next Monday, May 1, to remove the lesion and should it come back positive, they will most likely do the neck disection, too. We are hoping a second opinion will put us both at ease. How can this be happening???  I want to believe that it is nothing and all the lumps that seem so hard are nothing to worry about because the doctor says they move around when he palpates them. I want to try so hard to think positive and not fall into the trap of worrying about what it isn't until they can prove otherwise. Your thoughts and prayers, please! Your Friend, 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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#5297 04-25-2005 04:34 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Ed,
My thoughts and prayers are with you and Susan. You know how much you both mean to me....
Love you guys,
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
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#5298 04-25-2005 05:00 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Ed & Susan,
Ed, I almost couldn't believe what I was reading!
One one hand I was so happy to hear of your clear scans and the relief you both felt when told.
On the other hand I was stunned to hear of Susan's problems. I will be thinking of you both on May 1st. This post may sound rather negative about Susan's dx. It justs scares the hell out of me if it is. Can't say it more clear than that.
Susan my best wishes that this turns out to be
something they can cure quickly. Please keep us posted as there will me many members that will want to be in the loop!!
Love Ya, Danny Boy & Marcee.
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#5299 04-25-2005 05:24 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Ed and Susan, I'm here for you.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#5300 04-25-2005 06:17 PM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2005 Posts: 663 | Ed & Susan,
I am learning how easy it is to be paranoid of every little thing that seems out of place. Hold your heads high and know that you are being thought about more than you know.
Let us know how it goes and remember - life is all about mind over matter!! (if you don't mind, it don't matter) just kidding.
actually it is more like - fear over beer.... no no no..... cheer over fear! Yea that's it!
All the best!
Cindy
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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#5301 04-25-2005 09:24 PM | Joined: Sep 2003 Posts: 153 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 153 | hi Ed and Susan,
kathy and i pray that you both get good reports from the docs. we all know that the waiting period is can be very stressfull. thankfully medical help is often successful.
cu,
larryb | | |
#5302 04-25-2005 09:37 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Ed,
Like Dan and Mark, I too am shocked. Be sure to let Susan know that she is in Leah & my prayers.
I am glad to hear that your PET/CT is ok.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#5303 04-25-2005 10:10 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Ed
Tell me this is not happening? Try to stay positive, remember It aint cancer till the big man says so
all my love and prayers
Sunshine... love and BIG hugs to you both
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#5304 04-25-2005 11:40 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Ed, my thoughts and prayers are with you and Susan, God Bless, Love, 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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#5305 04-26-2005 12:21 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Ed,
I hope and pray that Susan can get something more conclusive with a second opinion, and that it turns out to be good news.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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