#55724 11-03-2004 09:28 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Sam,
Welcome to the forum. Being a man, I am not going to reply to your question as it looks like the replies you received are sound. Your life is about to take a big change. Your focus will be on recovery for yourself. This is one time you have to be selfish. Me First!!!! I hope your radiation goes well and you recover completely.
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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#55725 11-03-2004 04:09 PM | 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 | Sam,
I am curious if you are being treated at a comprehensive cancer center. I was a bit surprised at having radiation without chemo. I have not heard of too many people doing one without the other lately. Have you had another opinion?
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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#55726 11-03-2004 05:56 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Ed,
I was diagnosed just a few months before you and I didn't have chemo, just radiation. BUT, I also had extensive surgery and the radiation was for "clean up" my doctors called it. My margins were wide and clear and the lymphnode closest to my jaw had microscopic cancer, that is how it was put to me. Maybe that's why no chemo?? I've wondered also why some did and some did not.
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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#55727 11-03-2004 05:56 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Ed,
I was diagnosed just a few months before you and I didn't have chemo, just radiation. BUT, I also had extensive surgery and the radiation was for "clean up" my doctors called it. My margins were wide and clear and the lymphnode closest to my jaw had microscopic cancer, that is how it was put to me. Maybe that's why no chemo?? I've wondered also why some did and some did not.
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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#55728 11-04-2004 03:45 AM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Ed, I am not surprised that Sam does not have chemo as treatment since her cancer is of an early stage and as far as I know, chemo is not a standard option for our types of cancer especially when caught at an early stage. My friend who was diagnosed with stage 2 head/neck cancer at more or less the same time as me just received radiation to treat his cancer, no chemo, no surgery. He has recovered very well and has been cancer free for 3 years already. Without chemo, his side effects are relatively easier to cope with than mine. Both of us were treated in the comprehensive cancer centre of the same hospital.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#55729 11-04-2004 04:33 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Karen's right Ed, in an early stage cancer, multi-modality treatment is often not indicated. Check the NCCN oncology practice guidelines.
I think the reason it's not that common here is because many of us here don't discover the cancer until it is advanced.
Gary Allsebrook
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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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#55730 11-04-2004 09:50 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Sam,
you need to ask more questions:
Is this "angiolymphatic invasion" caused from the original tumor and did this change the staging?
How did they "see" this?
Is this a separate cancer, metastesis (regional) or poor margins from the original tumor site (local)?
Ask them about the status of "differentiation" (moderate, well, poor)?
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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