I am a 50 year old female that was diagnosed with NSCLC Stage3B in Feb '06. I had surgery to remove right upper lobe, had chemo, recurrence in hilar lymph node and several other nodes 9 months later. I started on Tarceva in Nov.'06 and after about 7 months I have no sign of lung cancer. I was however diagnosed with bladder cancer in May '07 and recurrence Oct. '08. I wanted to give you a sense of my history prior to my question.
I had really severe ear pain that began about 4 months after my lung surgery. I went to emergency room and told my oncologist about the ear pain. I cried, I complained, I went to 2 ENT with no results.I also had a MRI of the head and neck and it showed nothing. I have a PET scan every 3 months and the scan that I had in Aug. I told the person doing the PET scan about my ear pain. (My oncologist had not mentioned it in any of his orders even though I had been complaining for months) Well when I went to my visit to get the results my ocologist told me something had showed up in my right tonsillar area on the PET. I wasn't worried, scared, I was elated because I thought, they found it, now I can get something to relieve the pain. The Pet scan impression read as12MM focal hypermetobolic foci in the right tonsil near the base of the skull has a max SUV of 3.5. A CT of the neck was also suggested. Unbelieveable to me, after over 2 years of horrible ear pain the night before my CT scan I was in bed and felt as though something in my head just burst, I was so dizzy it felt as if someone was spinning the room, there seem to be alot of drainage, it was scary. I did not get up and go to the emergecy because I felt because no one could find out the problem I didn't want to be in the ER all night so I waited for the CT scan. The CT scan was done and I waited to get the DVD of the scan because I was scheduled to see another ENT who specialized in cancer and the tech came out and told me we had to redo the CT. Nothing showed up. I told my husband that something had burst in my head the night befor. He did the 2nd scan and I went to see the next ENT. He saw nothing on the exam and seemed not to be concerned with the PET results. I left just assuming the cyst, tumor or whatever had burst and was gone. The ear pain was gone for about 2 weeks. It had occured numerous times several times a day and it was this sharp, shooting pain that felt like a nerve or something. Also TMJ was ruled out at the early ENT. However, now the pain has returned. It is a different kind of pain. My neck hurts right under my right ear and my ear fills like it is full, or blocked off. I can feel like a slight knot in my neck. My neck pain seems to get worse each day. I had a PET scan Nov.20 and the results read - Similar uptake within the right adenodial tissue on the neck compared to the prior exam However this area is slightly more convex in appearance . Recommend correlation with direct physical exam, A repeat CT scan of neck may be necessary. My oncologist told me at my visit that there was no sign of the lung cancer, He made no mention of the ear pain. I asked him so what do we do about the adenoid area, just keep an eye on it and his response was yes we will keep an eye on it. It just seems that after seeing 3 ENTs, 2 MRIs, 2 CTs I still have no clue as to what is in this area. I can tell it is getting more convex, I can feel it. I don't know what else to do. I do feel like it is cancer related but that no one seems to be able to identify it. Please, please I need some direction as to what to do. I have come to terms with the fact I have cancer. My prognosis was only 15 months and here I am almost 3 years later with this ear, neck pain that is wearing me down. Please any suggestions will help.
I am sorry for the length of my letter:)
PS Each scan was read by a different radiologist so this hasn't been very helpfull either.