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Concerning symptoms - request help getting ready for ENT appt

Riseabove
Posts: 3
Joined: Sep 2012

Hi all. I've been ready your board trying to better educate myself on my concerns about oral cancer in preparation for my ENT appt Tuesday. I am concerned about being blown off as I have been three times already when I went to my PCP for my symptoms. I could use some feedback on how to verbalize my concerns to my ENT and which tests/screenings I should ask for.

I am 39 and for about 2-3 months I've been having left ear fullness and occasional pain in the left ear. I also have had some specific scraping-like pain in my left side of throat just beneath the jaw bone angle, making it hard to swallow. Sometimes that left side of the throat tingles. The symptom that is finally sending me to a specialist is the increasing voice hoarseness I've been having and a pressure feeling in the left side of my throat. Its constant now. I have no seasonal allergies, I've had no colds or viruses in months. I am not having any nasal congestion or anything to explain the symptoms. My PCP said it was eustacian tube dysfunction and anxiety. (I don't really feel anxious, just want to figure out what's going on). I asked for a Ct as my family has a hx of aucustic neuromas but he refused. He said he would be ordering the ct scan to treat my worry and not because it was indicated medically. I've tried nasal steroids, nasal antihistamines and antibiotics with no change. These symptoms are very persistent and concerning and my gut tells me I need to press for screenings and not just my doctor guessing it's nothing without actually running any tests to rule anything out. They talk about catching things early but seem to not take you seriously until you have a hard swollen lymph node!

I am assuming many of you too had a difficult time getting doctors to take you seriously and I respectfully request your advice on what would be the most beneficial tests I should request (I am thinking a scope and soft tissue ct of the neck) and any advice you have on presenting my concerns to the ENT so I am taken seriously.

My thanks in advance,
Sarah

CivilMatt's picture
CivilMatt
Posts: 3322
Joined: May 2012

Hi Sarah,

Tell your ENT of your concerns and see what happens. With symptoms as described an answer is just waiting for the right doctor to examine you. Without an obvious growth or biopsy a CT or PET scan are just a tool to help narrow the depth of concern.

For me, it was a lump, one visit to the primary, one week wait and see, a visit to the ENT, a Fine Needle Biopsy, a scan and cancer (no waiting, no illness, to this day I don’t feel sick).

Please don’t (over) scare yourself, read and be prepared. Sounds like you are already prepared for the ENT, very best of luck and well wishes.

Best,

Matt

I would take you seriously!

Mrs. Sarge
Posts: 205
Joined: Apr 2012

I think you are "right on" to request those tests, but the scope will/should be automatic from a good ENT. According to what they see, (a good Dr. knows what cancer, reflux, etc. really looks like) they'll send you for any followup you need. I just talked to a friend today that had been DX with thyroid cancer and treated effectively and began getting hoarse and some other symptoms. He of course was fearful of the cancer returning! The ENT scoped him and determined it was reflux and treated him for that and he was good to go! Hoping the same for you, but regardless, you are on the right road. Your Dr. will guide you the rest of the way. Please be sure to get a good ENT with good credentials, as you have read on these boards, this is nothing to play with! All the best to you and please keep us informed.

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

Heres what to tell the ENT. One, you have hoarseness. Two, you have intermittent ear pain. Three, you have left throat pain. Four, you have a family hx of accoustic neuroma. And five, you are concerned you have cancer. And six, tell him what has been done to treat, unsuccessfully. Thats the long and short of it. Dont embellish, and dont make it too long winded. Let him ask the questions. He will likely do indirect laryngoscopy on the spot. It only takes a minute. And you should also then get a CT, if this guy is any good.

Then, when the smoke clears and you dont have cancer, fire your PCP. You deserve better than this.

Pat

Mrs. Sarge
Posts: 205
Joined: Apr 2012

Sorry for the intrusion on this thread, but wanted to check on you and see how you're doing? I'm doing much better, had my first clean scope and CT scan. I will be seen by my original ENT in October and was wondering how often to expect a CT scan this first year? I will be seen/scoped every 2 months this first year, which is great for me!

katenorwood
Posts: 1897
Joined: May 2012

Sarah,
hey, I have been very lucky as I have a very slow growing cancer, that I am now in treatment for. I too was asking and saying hey...somethings not right. But always poo-poo'd and brushed off. Your ENT will listen and take you serious. Just be specific on what you've been experiencing, and the CT will be a good source of info for them. Write down everything...and have your questions written down too. Also if someone could go in with you, that would be great, as two sets of ears are better than one. I hope and pray for you that this is not a cancer, please keep us posted. Katie

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Keep looking for an answer until your symptoms are resolved. Steroids and antibiotics are a good first attack; but when they do not work (and time has not worked), one must look for other causes. Rick.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

just because your PCP ignored your concerns doesn't mean the ENT will.
but shopping for a new PCP might be a good idea--you clearly are dissatisfied and disillusioned with the one you have.

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

My opinion...do exactly as longtermsurvivor says: Not that the others don't give good advice...but longterm is a doctor...he has the inside scoop. :)

And def fire your PCP "after" you get the good news! (I feel bad saying it, but I like that one Pat bc he, the PCP, should be better)

Best,

Tim

Just George's picture
Just George
Posts: 8
Joined: Jul 2012

I started out with my PCP complaining about a sore throat and burning feeling in my left ear. They started out saying I had a bad cold. Then it went to a throat infection. After 4 months I demanded to see an ENT. ENT took about 30 seconds to say I had cancer.

Don't wait to long.

Riseabove
Posts: 3
Joined: Sep 2012

Hello all - I so appreciate everyone who took the time to respond to my original post. I've waited until some smoke cleared before posting again. Here is what has happened since early Sept when I first posted.

- I saw an ENT in Sept who did non-invasive scope during my appt. I am not sure if that's the right term, but he used a non-flexible scope and held it in my mouth to look up and down my nasoropharynx. This was not the scope you have threaded through the nostril and down the throat. He noted nothing abnormal. He told me to get my wisdom tooth removed and come back if it doesn't improve. He also said if I am anxious to call him back and he would order a CT.

- A few days later the throat pain got worse and I called back and requested a CT, a soft tissue CT of the neck with contrast, that came back normal.

- I had my wisdom tooth removed. The pain in my neck/throat didn't change.

- I followed up with my ENT after persistent and worsening left sided throat pain, sometimes it feels super tight all long the left side of my throat up to my ear. Sometimes it's just a pinpointed area just to the left of thyroid cartilage that kinda throbs and has a deep ache that comes and goes. Sometimes it feels like there is something poking me in my throat. It *ALWAYS* worsens when I have to talk a lot, i.e. days I work. It's very difficult to describe and I know I sound crazy. He told me at that point there was nothing more he could do and I should get a second opinion.

- This morning I saw a different ENT at the Univ. of Kansas Med Center ENT clinic in Kansas City. He moved and talked very quickly, but seemed knowledgeable. He immediately brought up HPV-related cancers and I told him that was exactly why I was there and was concerned about this persistent throat pain. He said "we are seeing it a lot. It is going to become a big deal" (scary) He seemed knowledgeable and his exam was way more through, he felt the base of my tongue, felt under the tongue, used the flex. scope, palpated all of my lymphnodes, etc. He did the flexible scope - squirted lidocaine in my nose, threaded the scope down my throat, etc.I told him I just a week ago started taking omperazole daily and he said to keep doing it. He said he saw nothing cancerous or precancerous and my symptoms were likely acid reflux-related and that I have had a very thorough work up and am fine and shook my hand and was gone. I wish I would have had time to ask a few more questions but he was on the go.

So there it is. I wish my symptoms were improving, as long as the poking throat pain persists its hard to let go of the idea that there is something wrong and that I need to be proactive in figuring it out. But I am not sure what else to do. I know folks here have way more experiences and knowledge about these symptoms, scans and exams. Does it seem I've done my due diligence and I just need to let this go and see what develops from here out? I don't want to be a nut case hypochondriac, but I also want to be smart about this and take reasonable steps to evaluate my symptoms and hopefully catch anything serious in the early stages. I so appreciate everyone's time and expertise.

Sarah

Mrs. Sarge
Posts: 205
Joined: Apr 2012

So did you ever get a CT scan? Maybe you wrote about it but I didn't catch it. If so, then I guess you're going to have to wait and see. If you haven't, I say you need to insist on a CT scan or something like that to verify that all is well. I have read so much on these boards that ENT Dr's are missing some of these cancers until they are very advanced and I know you are afraid of that, so my advice is to keep insisting until you are positive they have given you the right diagnosis. Pain isn't normal, hoarseness isn't normal unless it's for a short period of course. Maybe Pat will chime in with his expertise and advise you further.

Riseabove
Posts: 3
Joined: Sep 2012

sarge-
sorry - my post was so long it was easy to miss the key details. Yes I did get a CT of the soft tissues of the neck with contrast and it was normal.

katenorwood
Posts: 1897
Joined: May 2012

Sarah,
Have they checked you for inner ear problems ? I had issues with similar experiences years ago and needed tubes put in both ears. But your ENT should have caught this. I am so very happy no cancer is showing up ! We know our bodies the best...but saying this we can (because of family history) imagine the worst. I hope and pray they NEVER find a c-dx, but that you find out what is causing all the problems. Will be thinking positives for you ! Katie

Wanted to add have your thyroid checked also...simple blood test

Greend's picture
Greend
Posts: 678
Joined: Feb 2010

This is a repeat of several of my posts (I think this is in my profile) but I had the exact same symptoms plus a few added on for good measure. I finally saw a specialist after seeing several other specialists and found out the radiation had damaged my trigeminal nerve and there really isn't anything (that he knows of) to treat it. Difference is that he told me it usually shows up around the seven year point post-treatment and mine didn't rear it's ugly head until the 13 year point.

I was not happy it can't be treated but was relieved to know the cause.

I hope yours is something different that will get better with time.

Denny

luvofmylif
Posts: 344
Joined: Sep 2012

Funny, my husband went to the PCP for fever. He found the enlarged lymph node and ordered a Ct scan immediately. We had that done the next day and saw an ENT the next week and a biosy was done. Got the results of SCC in lymph node on right side and the next week had a PET scan and the rest is history. To me you kind of know in your gut when something needs to be checked out and isn't right and I would most definitely seek a second opinion if I was not satisfied. Hopefully it is all a benign situation but it is your body and you need the answers.

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