#26498 07-04-2004 11:10 AM | Joined: Oct 2003 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2003 Posts: 49 | It's been a long time since I posted here. I went to a lung cancer support group because of a lymph node on my left lower neck suggested LC. Then a nodule showed up in my left upper lobe. Had a lung wedge resection and it came back negative.
My last ct scan shows 3 parotid lymph nodes that look worriesome so now I'm scheduled for a pet/ct scan on 7/9. These are back on my right side where my first diagnosis for scc of the right tonsil came. So now I quess I'm back with head and neck scc along with possible SCC of the lungs. No primary was found for the left side nodes yet.
Right now I'm pretty discouraged and down but will fight the fight as soon as I understand where the battle really is. It's been a little over 2 years since I first was DXed with scc of the tonsil, had right radical neck disection. Has anyone had this type of battle and if so how is it addressed. Had Chemo and Radiation for the left side but not the right. Just looking for support, i have no answers to my questions fears and confusion. I know I need to wait for the results of the next test but I don't have a good feeling as to what I'm up against this time. Thanks for any feedback.
5-02 SCC T1N1M0 Stage 3 Right Tonsil 6-02 Right Radical Neck Disection 9-03 Recurrent SCC Dx Stage 4 unknown prim 12-03 7 Chemo 12-03 36 Rad 5-04 Left Upper Lung Wedge Resection neg 7-04 Right Parotidectomy 9-04 Began IMRT 10-04 Ended IMRT
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#26499 07-05-2004 12:54 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | brm1949, Sorry we have to welcome you back again. Would suggest two things to ease your concerns, though you may already be doing one or both. First, if you are not being treated at a cancer center, find the nearest one to you and go there. Second, which is really first, turn your worry and concerns over to the Lord. He will take the burden from you and leave you in peace. That doesn't mean that you don't use every means to fight the disease that He has put into your path, but if you turn your worries over to Him, He will give you peace of mind. Both of these strategies worked for me.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#26500 07-05-2004 11:15 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 | brm1949,
I am really sorry you are having to go through what you are right now. I can't answer your questions but I just wanted to tell you I will be praying for miracles of healing for you.
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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#26501 07-05-2004 02:32 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | HI brm1049,
This is your old buddy Dan chiming in. I am truly sorry you have to fight this battle again. It is a bastard of a diaease and one lousy place to get cancer. I don't think the first thing I would do is turn my worries over to the lord. A good cancer team at a good or great cancer center seems my first choice. Having a reoccurance of this diaease is deadly serious. Get the best medical cancer minds that are avaiable to you.
Hoping your recovery is short and your treatment tolorable. Please keep us posted.
All my Best,
Dan
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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#26502 07-05-2004 03:58 PM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2004 Posts: 164 | brm1949,
I am truly sorry that you are facing this again. I still find it revolting at times to type out everything that has happened to me and believe it's me I'm talking about. I feel so non-emotional, but deep down I'm torn up inside.
I discovered lung mets of my tongue cancer in early April 04 a mere 2 months after treatment ended. My lung biopsy tested postive for SCC. I have lesions in both lungs and 5 lesions in total, making my mets inoperable. I think the next step for you would be to discuss surgery as an option followed by thorough discussion of chemotherapy. My lung mets emerged in spite of large does of chemo before and after surgery, so my oncologist didn't believe that more of the same type of treatment would be of any value. I was offered a possiblity of a getting into a clinical trial for which I would have to travel away from my family or go on Iressa just shown to have some good results in lung cancer patients. I am just about to finish my second month of Iressa. Due to my pain level in my chest wall, I believe that the Iressa has down nothing in my case. I recently had to go up on my pain meds to cope.
You have another long journey ahead of you, but you can make it. I know you can. There will be the scans and test to determine final diagnosis. I would bet if you have a local reoccurance there will be more surgery followed by chemo/rad (if you haven't had your maximum radiation exposure) If you have a distant reoccurance you probably will be evaluated for all the same modalities of treatment (surgery, chemo, and radiation) to determine effacy. I hope all this isn't too overwhelming, but you did ask. Keep your family and loved ones near by for support. Also remember I'm only a click away if you need me.
I'm on your team. Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#26503 07-09-2004 11:09 AM | Joined: Oct 2003 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2003 Posts: 49 | Well, I got the results of my pet/ct scan. Positive for recurrent head and neck cancer. Most likely SCC because original tonsil cancer was SCC. Will see my ENT on tues. and my ONC on weds. to discuss a plan of action. Has anyone here ever had positive parotid lymph nodes and if so what was the treatment or how severe was the surgery. My original dx back in 2002 was right side tonsil SCC with 3 cervical lymph nodes positive. Had right radical neck disection, no rad or chemo right side.
5-02 SCC T1N1M0 Stage 3 Right Tonsil 6-02 Right Radical Neck Disection 9-03 Recurrent SCC Dx Stage 4 unknown prim 12-03 7 Chemo 12-03 36 Rad 5-04 Left Upper Lung Wedge Resection neg 7-04 Right Parotidectomy 9-04 Began IMRT 10-04 Ended IMRT
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#26504 07-12-2004 08:59 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 | brm1949,
I am sorry to hear your news. I can not answer your questions but just wanted to let you know I am hoping and praying they find a good course of action that gives you the best chances of beating the cancer.
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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