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ENT today and very terrified

grayson
Posts: 8
Joined: Jul 2009

I wrote 2 weeks ago re my throat problems and finally the day for the ent has arrived. I leave in an hour. I am literally shaking. I tried to get in alittle earlier in the month but wasn't able to see the best dr in our area until today. I am convinced that it is going to be cancer. I'm not sure all my reading has done as much good for becoming proactive and aware as it has for making me very panicked I admire all the courage you all have in dealing with your issues. I feel like I can hardly get to the dr due to my fears. What is the process if anything looks suspicious in the original exam? Do they schedule a ct or pet scan being that I think its either oropharynx or hypopharnx related? If anything is suspect, would you go to a national cancer center right away (we're an hour from Johns Hopkins? I know I'm rambling on and I haven't been diagnosed but I am very worried. I must admit that a can be a worrier. I would like to know if most of you were able to take charge of your fears and deal right away with whatever life throws your way.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Way too early to predict (or even guess) a course of action. I know it is easier said than done, but for now take it one step at a time. Find out the results of the exam. Determine next steps. Ask questions until you get satisfactory answers. Put together a plan accordingly.

All of your fears and anxiety are 200% NORMAL. We all go through very similar reactions when dealing with this unfortunate possibility. It will get better, I promise, in part because you now have a "family" of sorts, of those of us who have collectively experienced it all and are here to help you...........if even needed.

Get back to us here and we will support you through whatever may be ahead. And, it is still likely to be not nearly as bad as it could have been.

Slow down, take a deep breath, and remember.........no matter what the situation, there is an appropriate course of action. And knowing that course of action means everything.

Anxious to hear your results.

JK

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delnative
Posts: 452
Joined: Aug 2009

First, read JK's reply several times over. There's a lot of good advice there.
However, if it turns out you do have cancer -- and here's hoping that you don't -- I can heartily recommend Johns Hopkins. I had my tonsil cancer treatment there (six weeks of radiation and chemo, followed by a modified radical neck dissection) and they are top of the line. It's an amazing institution, and all your care is coordinated. For instance, if the chemo is affecting your hearing, which it can, they get you in to see one of their audiologists immediately.
If you do have cancer, I also would strongly recommend that you contact Dr. Wayne Koch at Hopkins. He is very, very good.
As for the fear part, damn right I was scared. But Dr. Koch determined that the tumor I'd had removed at my local hospital was HPV-positive -- something they wouldn't have tested for here in podunk -- and that meant my chances of recovery were much better than if it'd been caused by smoking or drinking. Knowing that as I went into my treatment was a strong antidote for fear: I figured I could get through anything, and it looks like I did. I'm convinced that positive attitude got me through it in better shape than if I'd already lost hope. A strong faith in God was a big help, too.
So hang in there, and take things as they come. As it says in the Bible, "And who of you by being worried can add a single hour to his life?"

--Jim in Delaware

pmfennell's picture
pmfennell
Posts: 28
Joined: Jun 2009

Hello grayson

Yes, being frightened of the unknown can be very worry some. It is too early in the process to advise on a plan of action. Your docs. will put together a plan of action if it is in fact cancer. Take a notebook and create a journal to record questions and answers for your docs. before and after your meeting if it is cancer. This is a regular practice for patients because a lot of info. is coming at you. News like this put me into shock. Thank god my wife was there to see me through the process and ask questions. My best advice and I know it is easy to say is don't worry, until there is something to worry about. I hope all is OK. Keep us posted. But yes, being worried is quite normal under these circumstances. And yes, go to the best place you can for treatment. Chances are they have seen it all and have many options for you.

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jkinobay
Posts: 247
Joined: May 2007

Update us when you have time................we are anxiously awaiting news. JK

AppraiserGirl
Posts: 20
Joined: Jul 2009

I'm one of the great worrier's too. Let's hope you have nothing to worry about!

With my brother, the ENT ordered a CT scan and after those results where received, scheduled a biopsy to see if his suspicions were correct. They were and then it was on to the radiation oncologist and a PET/CT. It seemed like forever until a plan of action was underway, but all was finally implemented and treatments begun and now I feel more at ease cause something is being done. It's the fear of the unknown that really gets you.

It sounds like you are proceeding in the best way and once you know what your are facing, I know you will take charge of the situation and get 'er done!

If you do receive unfortunate news, keep your chin up and be encouraged because you are still alive and strong and you can fight. And one day down the road, after all your treatments are over and you are cancer free, you will be helping someone new on this site to keep from worrying.

Sorry to be so wordy. I'm thinking of you!

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Right on and Roger That.

grayson
Posts: 8
Joined: Jul 2009

well my doctor just did a visual exam with a tongue depressor and stated that i having swelling in my throat area which he attributes to gastric reflux. I was so stressed to have him look in my mouth that I didn't press on alot of issues I wanted to. He upped my nexium which I've been taking for 7 years. I came home and realized that I felt I should have had a more extensive exam and continue to have a sore throat and feeling of something caught in my left side of throat. My husband wants to believe this is the problem but he agrees that I should pursue it more if it continues with no improvement. The ent has me scheduled to return in a month. What do you think I should do at this point? I know I'm not a doctor but this doesn't feel right to me. I want a scope or something put down in my throat because the sensation feels lower than what I think he could see from this brief exam. Am I overreacting? What were your experiences in finding an answer to symptoms you were having? I also know doctors start with the most simple of explanations and work their way up in many instances to more serious issues. What should I do next as I am not feeling any better yet? Sorry for my ranting I just don't know if I am pursuing it enough or should stop pressing on about a tumor. thanks jennifer

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

It is amazing what your body can tell you. More amazing is the number of times that we either don't listen to it or we let someone (your ENT for example) tell us that we are mis-reading the signals.

Of all the reasons to go to a Dr., my favorite is to get good news. But, sometimes you will only get that news after you have pesterd them into in-depth analysis.

I have an unfair advantage, which is hindsight, but I can tell you that had I listened to my first ENT, who said the swelling in my throat was just a benign watery Branchial Cleft Cyst and just wanted to just monitor it with monthly exams for awhile, had I listened to him I would likely have been dead about 18 months ago. I got a second opinion that eventually led to the diagnosis of HPV 16 Positive Squamous Cell Carcinoma. That second opinion without a doubt saved my life.

So, were I in your shoes I would step up and demand a Laryngoscopy, perhaps even an Endoscopy since you have a history of GERDS. Then, if they saw anything suspicious, I would ask for a PET scan or biopsies or whatever they recommend based on the scopings. If this ENT stands firm against it I would seek a second opinion. Ask around or research on the NET to find an ENT in your area that has extensive experience with Head & Neck Cancers (HNC). In my case, my ENT had little to no experience with HNC. Not his fault of course, but the second opinion ended up getting me to the "experts".

Just my opinion, but you can't fool around with this stuff. Hopefully, and likely to be, that your first ENT is right. But if he is overly cautious and you don't force the issue and if this takes a wrong turn you will forever wonder what it would have been like had you pressed for that second opinion.

On the other hand, if a second opinion from a knowledgeable, experienced ENT either confirms or counter-mands the first one, you will be relieved to know so much more than you would have.

We are here for you. JK

AppraiserGirl
Posts: 20
Joined: Jul 2009

If you have a gut feeling that something isn't quite right, check it out further until you are satisfied. I agree with JK too.

I'm hoping your ENT is right and it's just GERD!! Please keep us posted, we are thinking of you.

LANATIVE
Posts: 6
Joined: Jul 2009

Go with your gut. Two doc's denied I could have CA - no testing of course - and they should have listened to me. You may be mistaken - in which case you just whip out your wonderful sense of humor over the whole thing OR you may just be very intuitive. You know your body better than anyone. Don't forget it. As one different doc told me, the minute I thoght it was CA the docs had an obligation to scientifically prove to me that I was wrong - if I was. Go with it.

train-nut
Posts: 101
Joined: Jun 2008

I'm with JK. My first exam was just like yours..."nothing". A week later it just didn't feel right so I went back and asked for a more thorough exam. He used an endoscope..."there's something deep in your throat that shouldn't be there". I wish you well. Rich

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

No matter how much support and exchange you get from your spouse, immediate family, extended family, or close friends, YOU ALONE WILL ALWAYS HAVE TO BE YOUR BEST HEALTH ADVOCATE.

That will never change.

Keep us posted. JK

grayson
Posts: 8
Joined: Jul 2009

thanks for all your support and comments will let you know what happen at my next visit grayson

noonenuc
Posts: 1
Joined: Aug 2009

I know EXACTLY how you feel, having just gone thru it myself yesterday. I was terrified yet couldn't wait to see the dr. In 2 weeks, on Aug. 31, I will undergo a hemiglossectomy. I am still scared but know I have no other choice. I was most terrified about maybe having to have radiation and/or chemo. I don't have to have that; just the surgery. That is scary too as I will need to learn how to talk again, swallow. My taste buds may be gone. They told me I may lose the sense of feeling or even the motion of my tongue. I already have great difficulty in swallowing and am limited to very few food choices. I have become afraid to eat and REALLY dread having to go out with friends because it ALWAYS involves eating and talking. I can't do both at the same time. I end up having to run to the restroom and regurgitate my food. It won't go past the lower esophageal sphinter. The food just stops and can't be washed down either. Anyway, sorry to be rambling. I just want you to know I am and will be thinking of you and for you to also know that you are NOT ALONE in this. A friend (who has cancer) told me "You will be OK." She was right. I will be; and you will be OK too.

noonenuc

grayson
Posts: 8
Joined: Jul 2009

good luck with your surgery I'll be thinking of you and wishing you all the best. I go back in 2 weeks for a more thorough exam, and will go from there. I plan to use Johns Hopkins if the do find something wrong. We live about an hour away. I don't want to mess around with these issues anymore. I'm glad to hear you don't have to have radiation or chemo Is yours base of tongue or oral tongue> How did they locate your problem at the ent? Thanks again for your support and keep it touch grayson

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