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

Ok, Marc,
Sounds like you have had a lot of tests & doctors' visits. You should feel fairly safe at present. I can guarantee to you that there is such a thing as getting a sore throat from nerves. I have done it myself! You can tense your muscles so much in this region that you can make them sore, and I'm not sure of the exact mechanism, but trust me on this one. Same with ear pain. I wouldn't ignore these things, but you have not ignored them. Furthermore, taking ativan makes the throat issues go away perhaps because of the tension causing them.

You need to put away the cigars, & all tobacco, if you have not already. You did not say if you had. You can't change the past.

I would try to get your mind on other topics, maybe find a hobby if you don't have one, do some exercise, or volunteer! Helping others is a great way to get your mind off yourself. Actually you could do all of these things.

I can't say I know for absolute certain that you don't have any physical problems, but I think you should feel that you have taken precautions. Six different ENTs, biopsies, FNB of lymph node . . . that is impressive!

Not making light of your fear, but I do think you should chill and enjoy life a little.

Best,
Anne

PET scan is not the ultimate answer either--what it shows is glucose activity. It did not show my sarcoma because my sarcoma was inactive. Only a CT showed that. Please save your money. Find a different therapist if the ones you have seen aren't doing you any good.

I quit smoking the first day in April that I saw blood, I should have quit before but didn't. Also alcohol cut back to an occassional beer or glass of wine.

This throat issue has persisted for 2 months, so it is not simply in my head I believe. I never had an issue like this before.

Nor with fatigue and sleep, or ear pain, first time ever.

I went through the usual motions, saw a GP that didn't give a s##t, looked in my mouth for 5 seconds and said pharyngitis (sp) and gave me anitbiotics. Saw another GP that did the same and called it something else. Then I discovered that my great health plan was open access so I can skip the GP nonsense and go without a referral to whomever I want.

I need to get to the bottom of this because I can tell something is really wrong. I cannot just pretend it is not there but I agree with resuming life at the same time.

Mark

Dr. Borrowdale of Loyola did my surgery after biopsies done at another hospital showed SCC of the oral tongue. If Dr. B said you're fine, believe him and try and relax a bit and put this out of your mind. I would certainly keep a watch on things and go back for check-ups, but for now I would be assured that you DON'T have cancer. I trust Dr. Borrowdale 100%, THE MAN SAVED MY LIFE.

You have taken a step in the right direction by quitting the smoking. That alone may have caused the throat irritations, so you might be getting better because of it.

Wishing you well.

Mark,

A couple of points here;

1) Given the tests you have had, and the quality of the institutions and doctors that preformed them, it is almost a certainty that you do not have cancer.

2) It�s great that you have insurance that will pay for any test and or doctor visit you could wish for at the drop of a hat, but that all goes out the window if you lose your job.

3) Your only remaining consistent symptom is a scratchy throat. Given the extremes you have gone too recently I think you are overdoing it. Get some Halls lozenges.

4) Although you may have never presented with OCD in the past, your notes here look very much like a classic case. Forget about the cancer doctors and stick with the Psychiatrist. You need to get back as much of your old life as you possibly can before you end up destitute and friendless.

Somewhere down the line you convinced yourself that you were stricken with cancer and going to die. You are refusing to take �no you don�t have cancer� for an answer.

PET scans primarily work well for those who have a confirmed case of cancer. They are good tools to measure the progress of treatment. You have already had all the tests used to confirm cancer and they were all negative. You aren�t close to losing it, you�ve lost it. You need as much help as you can get to get back to the life you had before. You won�t find that help in a cancer center. Call that psychiatrist back.

You sound depressed....I know I have been there too when I fought my cancer.

Trust what your doctors are telling you....not your mind.

I am glad your seeing someone to talk this through...I did as well and it helped and after a year my depression lifted cause I finally trusted what my doctors said.

Agreed on all accounts - I do beleive in self fulfilling prophecy - saying Im sick I'm sick I'm sick will stress you out so much that you do actually become sick. Trust the dr.s if it was just one you were seeing I would say get a second opinion, have the tests etc, but you done all that and more. I would be overjoyed you are clear, and go on and live your life. Have regular check ps if that comforts you but it sounds like you are ok. Take care.

Marc,
It is hard to tell someone that what they are feeling is the result of nerves or depression. This group errs on the side of caution in that we tell people to get another opinion, get another test, get a biopsy. If these folks say, no, we don't think you have anything, believe them.

A possibility for you: have your doctor check your vitamin & mineral levels. For instance, Vitamin D deficiency can really create problems in your mood. I used to never take vitamins, no multi-vitamins for me, but having unearthed some deficiencies I now take them. Of course I had cancer treatments which would explain some of that. You have stressed yourself, and stress depletes stores of needed minerals such as magnesium. You probably take a multi-vitamin, but if you don't or even if you do, you might consider having some of that checked out. I am not advocating to go out there and blithely take high doses of everything on your own. Use that medical insurance and see an internist who can check those things out.

I really do wish you the best.
Anne

Thanks to all for the advice. I am sleeping through the night now with Unisom but still have some fatigue during the day.

I still find it odd that the Ativan makes the scratchy throat go away, plus when I take a Prilosec at night the green bile on my tongue is less hinting at GERD as a potential cause?

I am going to continue seeing a few ENT's every few months for a check up. Does it make any sense for me to conult with an oncologist at this point for their perspective?

Regarding the one lymph node that was enlarged and negative by FNA, how often do I need to have that checked with ultrasound? I would not want to wait for it to bulge out of my neck.

My psychiatrist is recommending Lexapro for anti-anxiety and depression, guess I will give that a try as well.