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Need direction - where to go next - is it cancer again?

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

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Hi Jaree,

Sounds like you have been through the ringer! Are they finding nothing on the scans or nothing to worry about on the scans??

BILL

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

They don't know either. It is not showing up on MRI or CT but is showing up on PET. In addition to all that I put in my post I have had surgery on the same side for skin cancer and vocal cord surgery. So who knows what it is. I just don't wanna sit around and do nothing, yet I can't find a Dr. who knows what it is.
Jaree

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am sorry for what you have went through. I think most of us know when something is wrong. It took 4 months to find the cancer that I knew I had. Like you I had delt with doctors that do not listen and seem to blow off symptoms or problems. Its easy for them when they don't have the pain. I would not quit looking for the answer in your case. There are always other ENT's and Oncologists. Write down each time you have pain or changes so you have a detailed log of what is going on. And don't be afraid to stick up for yourself. Tell the ENT that if he does not know the answer then send you to someone with more experience. There are good doctors but it seems production line medicine for profit is taking over. I had my doctors send me all my medical files and test results so I had my file when I went to see someone.
5 years ago one of the best medical facilities in the country was about to take half my face off. They had a meeting with their board of talented doctors and looked over my case. It was decided that I needed a 12 hour operation and 5 doctors would be taking my face apart so I could live a bit longer. 3 days before the operation I started asking where my 10 day biopsy results were. For some reason no one had bothered to check as they were 95% sure I had Adnoid Cystic Carcenoma. My results were in a computer file and I had B-Cell Lymphoma which threw the operation out the window. Of course they were sorry for telling me I would die by having body parts removed one after the other. But the fact remains that mistakes are made even at the best hospitals. 3 times I have had scans that showed masses and it turned out to be nothing. As soon as you write cancer on the medical form they are going to see something. Its frustrating but don't quit looking for answers and drive them nuts if you have too. Sometimes we think putting up with the pain is easier than dealing with the medical community. But then again my will to fight kicks in and I am not afraid to drive a doctor crazy if I have too. Keep looking for answers. Slickwilly

ljoy's picture
ljoy
Posts: 85
Joined: Dec 2007

Jaree,

You have obviously been through a lot. I'm a three year survivor of tonsil cancer. Others on this site have heard my story. Long and short, found a lump in my neck. Removed and found to be cancer. ENT could not find primary. Requested a referral to M. D. Anderson Cancer center in Houston, TX. Two days and they found primary in right tonsil.

Not knowing where you live, maybe you should consider one of the major cancer centers to review your case. They see so much more of the rare and ununusual cases compared to ENT's and local oncologists.

Just a thought.

Hope you get some answers soon.

Best wishes.

TereB
Posts: 288
Joined: May 2003

I am sorry you have been thru so much. I went thru a year of pain in my head, getting worse as time went by. I had had surgery to remove a tumor in my inner ear and the ENT/surgeon, kept telling me he was the doctor and he would know if the tumor had grown back. Sure, he would know just by looking at me without tests. I went to all kinds of doctors and there were no answers that made sense. My ENT finally said it was stress from getting my kids ready for school in the morning. Anyway, I thought a neurologist is who deals with pain and I went to see one. He found the tumor that had been excised, had grown back and was twice the size of the first one. Needless to say, I looked for a new ENT.

Three months ago I would have told you I had the best doctors. Right now I am very upset because I've been feeling pretty bad. Nobody could give me an answer until I went to emergency and told them maybe it was my thyroid becaause I felt something there, they did a blood test and found it really was my thyroid that had gone crazy. I am being treated for that now and I am not so upset with my doctors. My ENT did look at my throat but saw nothing. My onc ordered an MRI and a CT scan and nothing showed there even thou I have two nodules and a cyst in the thyroid. Sometimes it may not be the doctor's fault but many tests do not show everything. We need better machines.

Doctors are not God... they do not know everything. If you think your doctor is not listening to you or ignores you, change doctors. Some are better than others. Keep looking for answers until you find what is causing the pain and problems in your ear.

All the best,
TereB

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