#5316 04-28-2005 01:30 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: Sep 2004 Posts: 153 | Ed and Susan,
I haven't spoke with Susan, but Ed was kind enought to offer me information and encouragement when I first approached this board. I am so sorry that this additional stress has entered your life but we have to believe it will all be okay. Please let us know as soon as you find something out. Our thoughts and prayers are with you. If there is anything - ANYTHING - we can do, please don't hesitate to ask.
Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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#5317 05-02-2005 11:42 AM | 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 | Well,
Thank you all for your encouragement, your kindness, your thoughts and prayers. We went for the second opinion and my otolaryngologist thought there was nothing to worry about although he said just because they move around is not a postive sign of no cancer. He then proceeded to tell me I can still see him every 8 weeks if I was willing to drive a little farther to Nashville. He assured me that should I have a recurrence, he would gladly do any surgery or further treatment. He then told me I was "well fed" which was much more diplomatic than the "huge" last time.
Susan and I switched chairs and then he methodically checked her out. He looked down her throat with a mirror and felt it was something that would be removed and never cause future problems but cautioned us to not do a frozen path as the real results come from a complete path.
Today we spent a good portion of the day at the hospital and after about an hour or so, the doctor came out and said he did not feel there was anything to be concerned about and even stopped short of any lymph node removal. He said he removed everything and did not find anything other than the one spot on the base of the tongue. We should get the path results by Wednesday. I will certainly update y'all then.
Thanks so much for letting me lean on you. You are the greatest folks I have ever known and I am truly honored to know each and every one of you.
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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#5318 05-02-2005 05:07 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 | OK, so now I can stop holding my breath? Whew!
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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#5319 05-03-2005 09:18 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Ok Ed, thank you God, keep us posted with the path reports but it's looking good.
Sunshine... love and hugs
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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#5320 05-03-2005 10:55 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dear Ed
So far so good.. if possible let us know how Wednesday goes...no rush of course, but Wednesday night would be good !!
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#5321 05-04-2005 12:06 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Keep the good news coming Ed!!!
All my best to you & Susan, Love Ya, Danny Boy
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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#5322 05-05-2005 05:13 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Ed, Susan,
So do you get the pathology report? I will not breathe easy until you have those results. Hang in there. Hope it is all good.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#5323 05-05-2005 03:16 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | Oh, my word! I just want to cry in awe and wonder that we are so blessed to have all of you in our lives. Thank you so much for all your prayers and vibes and hugs and love!
I've been freaking out since I felt the lymph nodes (I wasn't too alarmed because I have a history of hyperplastic nodes and have subsequently been diagnosed with Castleman's Disease). This time there were way more than usual that popped up way quicker than usual. I had a totally new sensation of pills stuck at the back of my throat and deep intense inner ear pain. My left SCM ached all the time and my voice would change when I turned my head.
I thought I was doing good and that Ed didn't think it was a big deal until I headed off to my ENT and he stuffed the larygscope up my nose and saw "a mass".
Any way, I was such a downer to my family I just couldn't do that to you guys (since November when 4 nodes popped up) and I stayed away. (I know, Wah Wah Wah!)
Today I spoke with my ENT. I love him dearly and his mom was having chemo at the same time as Ed so I got to hang out with her a little bit, too during Ed's treatment days) It was a HYPERPLASTIC TASTEBUD! Is that the most stupid (and blessed) thing you ever heard??? Why couldn't I have had problems with hyperplastic breasts instead of hyperplastic lymph nodes, tastebuds? It doesn't make sense! ARGH!!!
If any of you have ever seen Father Goose (with Cary Grant) I think I have Leslie Caron's snake bite!
We love you all so very much and thank you for all your support and encouragement.
Hugs to you all!
Susan (aka: The Tastebud Queen)
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#5324 05-05-2005 09:13 PM | Joined: Jan 2005 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2005 Posts: 156 | bless you susan you sound very positive u stay that way.hugs and prayers sent your way best regards maz | | |
#5325 05-05-2005 09:56 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Susan
I don't care what name they put on it as long as it doesn't begin with C
Well done
Sunshine...love and hugs
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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