 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Lisa (Delaneli),
Welcome to the neighborhood. Sorry you had to find us but glad to have you here. As everyone is telling you, hit this thing hard the first time as you may not get a second chance. I had my primary site at the base of my tongue and was Stage IV. I did not have any surgery but did have chemo and radiation. I just passed my one year post treatment date and I am glad to have hit the beast hard even though I did not have the neck dissection.
Gather all the information you can. It will only help you in making the best decision possible in formulating your treatment plan. As people are telling you, do not worry about the side effects because having them are an indication you are still kicking. I am hoping the medical team you choose comes up with the best possible plan of attack for you to beat the beast.
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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