I'm from Pittsburgh PA and the doctors I've dealt with are some of the best in the country in their field. My ENT specializes in head and neck cancer. My situation is a bit different they say. Tors, tonsillectomy and adenoidectomy was to find and remove the primary cancer site. My petscan showed absolutely nothing anywhere. Most cases the cancer is hiding in the base of the tongue or the tonsils or any connective tissue around the area. And since the petscan showed nothing except a small raised area on the base of my tongue, they assumed that was where it all began. So surgery was the answer. I was only supposed to be under anesthesia for a 3 hour surgery. I ended up being under for nearly 6hrs because they were actively slicing bits out of the base of my tongue and testing them in real time as I was under. Since they all kept coming back negative they eventually called it and ended surgery. Not a single sample from anything they took out of my tongue or from the back of my throat, tonsils or adenoids were positive for cancer. Nothing. Their explanation was that either my body eradicated the primary site of cancer cells after it had already spread to my lymph node, or there are still cells hiding somewhere. All in all, my lymph node from my left side of the neck was the only thing they cut out of me that was positive for SCC. What concerns them most is my biopsy had showed my lymph node to be 2.5cm and one month later I had the surgery to remove it. It had grown from 2.5cm to 6.5cm in just that one month. It also was found to have minimal extranodal extension. But this was smaller than 1mm. Minimal concern. They told me since my primary is unknown and the cancer had broken through the protective layer of the lymph node, even though it was very minimal, is why chemo and radiation is strongly recommended. I still am concerned. They're recommending normal dose too. I am going to tell them I want low dose radiation and low dose chemo. Thing is, my body and mind is likely not going to take this well whatsoever because I'm still dealing with post stroke symptoms. My throat and tongue are still actively healing. It's still so sore to swallow and where my lymph node was removed is super painful and sore around the area. Directly over the area and just around the scar I have no feeling or sensation at all. It's like the skin is totally numb and isn't there. I can't feel anything when I touch it. I am seriously scared shitless. These treatments are going to mess me up bad. I'm in no shape physically or mentally to deal with this and I feel lost and alone. No clue what to do. I don't want this cancer to return at all, but I also strongly believe the recommended treatment is overkill for me. These doctors told me as much. They're saying I'm young and fairly healthy so they want to make sure I get the amount of treatment that will make sure this cancer is all eradicated with minimal chances of returning. But at what cost? What cost am I going to pay to make sure this cancer doesn't come back? I don't have the time to get a second opinion either. I have another 2 months of sick days left to use from my job, then I'm on my own. They offer the family medical leave but it's only for 3 months without pay. My employer doesn't offer disability insurance or anything in between. Meaning after FMLA is finished, I effectively lose my job. If I began treatments today, which is 6 weeks for 30 radiation and 7 chemo, that leaves 2 weeks left of getting paid. Then 3 months is FMLA to fully recover enough to go back to work. I am already screwed 😞