Hi All -
I am neither a survivor or a patient, but I became a member when I had a scare a few weeks back and I am here again in need of some input and advice. This is going to be a long post. I have not been to work in 3 weeks and am barely functioning.
Background - I am a 37 year old male that was in perfect health until April of this year. I do have a 7 year history of smoking cigars daily and drinking moderately.
April - Noticed I spit up some blood tinged sputnum in the morning, not coughed it up. Ignored it for a few weeks until noticing it was daily.
I went to a renowned ENT in Chicago in May and had the larygnscopy (spelling) which showed nothing abnormal but they scheduled me for sinus, neck, and chest CT's with contrast. Findings only were a couple level 2A and 2B nodes around 1 CM and a level 2A on the right around 9 MM. I thought I was in the clear so felt better.
In June I started to notice a persistent scratchy throat and some pain radiating to my right ear, which is when I started down the path I am still on now. Internet research was both a good and bad idea.
I went back to the same ENT and he scoped me again and found nothing. I went to 2 other ENT's in the area and the result was the same. My right tonsil is ever so slightly larger than the left. Not sure how long it has been that way.
In June I had an uppper endoscopy which was perfect, bloodwork all normal, and a broncoscopy (spelling) also perfect. The ear pain by this point went away but the scratchy throat came and went.
In early July I had MRI's with contrast of the head and neck. The radiologist noted the left nodes noted above were smaller but the 2A node on the right was now 1.5 CM (if these folks are measuring them the same which I am not sure about).
At this point I am scared out of my mind so I went to the Cancer Center at Loyola University to see Dr. Borrowdale the Head ENT and leads the Head and Neck Division of the center, all he deals with is cancer. He examines me and scopes me seeing nothing. He did recommend a US FNAB of the right sided 2A node.
The FNAB was negative and noted as a reactive process fatty hilum.
I also had an excisional biopsy done on the right tonsil the same week which also came back negative. They took a large piece of it, but I wish it was smaller pieces from all around it.
So at this point despite my symptoms I have:
1) Been scoped about 10 times the last 3 months by 6 different ENT's and all was good, nothing abnormal noted.
2) Negative CT scans.
3) Negative MRI scans.
4) Negative lymph node FNAB.
5) Negative retromolar trigone biopsy, forgot to mention.
6) Negative right tonsil biopsy.
My BOT is symmetric and ok I am told.
Current - This has taken over my life and consumed me completely. I am still experiencing the scratchy throat at times but the ear is ok. I also have severe fatigue and insomnia nightly which may be related to the inactivity and anxiety/stress. Those are really my only symptoms, but I worry about the lymph nodes and right tonsil.
I went to 3 ENT's this week that all scoped me and said it is fine. They are ok with seeing me every other month or so to monitor for changes. Obviously I am seeing a psychologist and psychiatrist also for the first time in my life. The strange thing is that when I take Ativan the throat issues goes away? I am now on FMLA at work so more is at risk. My friends and family are all very concerned about me, I am not leaving and doing any normal activities. I never had an OCD or event like this in my life and don't know what to do from one minute to the next.
I seem to only feel in control/calm when I am organizing doctors visits, tests, documentation, researching topics, etc. Everyone is telling me this is all in my head but the symptoms I have are not, I have not felt right since May and know something is wrong.
I have had it so at this point I am meeting with an oncologist next week to discuss the situation get his thoughts and ask for an order for a PET scan, that is the only way I can put my mind at rest and know for sure at this point. I will pay for it myself out of pocket if insurance says no. I am at that point where I need an answer as to whether I have something or not. I know the risks for false readings but it is better than CT or MRI and frankly if something is developing I do not want to wait until it presents as a tumor or nodal involvement.
I am in a vicious cycle right now that is going downward fast, at this point I am going to lose everything if I don't get control of this and myself. I thought I was doing the right things by being my own advocate pushing for tests and answers, etc.
I wake up each day thinking I am going to die...
I know I cannot control whether I get something in the future, but am trying to find answers as to why I am feeling this way and what to do next...
I need some help.
Marc
