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Ear / Neck pain

Ree5558's picture
Ree5558
Posts: 21
Joined: Jun 2006

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.
Jaree

cabbott
Posts: 1048
Joined: Aug 2006

Don't apologize for the length of your letter! You have a problem that isn't easily stated in two lines and neither is it easy to solve. The repeat CT after a sufficient wait will give the doctor a chance to see if things are changing and how they are changing. If they were sure it was cancer, I think you would be on a new course of chemo right now. If they did a blood test and thought you had an infection, they would start antibiotics. But it sounds like they don't really know. Could the doctor you like to work with the best send all your scans and records to the best teaching univeristy hospital specialist they know for a consultation? There a number of doctors could check things out and give him or her their best opinion on what is happening and what to do next?

I have two kinds of cancer too. For me the breast cancer came before the lung cancer. After a recheck of a mammogram, I went back to talk to the radiologist. I had never done that before but so many people told me not to worry that I was beginning to worry! She took the time to show me all my slides and point out that the cyst they were looking at was clear on the inside which meant that it was benign and not a solid tumor or cancer. However, she mentioned that sometimes a tiny bit a ductal carcinoma in situ (not quite yet invasive cancer within the duct) can block a duct causing a cyst to suddenly appear like mine had. She sent me home for a 6 month wait but promised to refer me for a biopsy if things looked ominous then (unless I wanted it right then which I didn't! What did I know!) Well, 6 months later she referred me for the biopsy. Not one radiologist since thought that they would have referred me, but I did turn out to have stage one breast cancer, easily cured with surgery. I only mention this because sometimes cancer causes a cyst. Before you are convinced that you have cancer though, be aware that sometimes infections cause scar tissue that feels like a lump. Arthritis can cause uptakes on CT scans that look suspicious too. And there are lots of other things that can be going on, none of which I'm familiar with. I wonder if the doctor you like working with the best could ask the best teaching university hospital group they know of for a consultation. This is done for difficult complex cases. You wouldn't have to go, but all those scans and records would need to be gathered and sent. Then that group could sit down and give their opinions in a report to the doctor. Meanwhile, the doctor definately needs to determine how to treat the pain you are in or have you see a pain specialist. Yep, they have doctors that specialize in that too! Good luck!

C. Abbott

Ree5558's picture
Ree5558
Posts: 21
Joined: Jun 2006

Thanks for your reply. I didn't mention in my original that in addition to the lung and bladder cancer I had surgery right underneath my right ear, the area with the pain to remove skin cancer. It was basil cell carcinoma but it was pretty deep and required two surgeries to remove. Remarkably I found a family member that is a radioligist and I will ask my oncologist to set me up a scan with the hospital she works for. Thank you for mentioning there are cyst that are cancerous, I was wondering about that. Crazy, crazy but I also had vocal cord surgery several yrs before my lung cancer, so I have had lots of problems in this area. I think I will wait until after the holidays and if I am having problems then I will insist on the CTscan.
Again thanks for your reply.
Jaree

Greggriggs's picture
Greggriggs
Posts: 132
Joined: Dec 2006

Hi Jaree
I know the feeling my oncoligist tells me the same thing he only cares about the lung cancer.
He is just there for the ct,pet, and e-rays.
I have been haveing lotsa problems not like yours but like your in the respect they don't know whats up .
So keep on them an lotsa luck you are in my prayers
Greg

Ree5558's picture
Ree5558
Posts: 21
Joined: Jun 2006

Thanks Greg and I will keep you in my prayers. Have Happy Holidays!
Jaree

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