Hello everyone,
My name is Dave and lets see where do I start. Last year around april I started getting a stiff neck on my left side and problems swallowing and ear pain. Went to my primary and she did a ct scan. Scan came back good, problems persisted and I was seen by an ent. He said it was acid reflux, and some tmj. Well I took meds for acid reflux and swallowing issures went away with the ear pain. Fast forward to Jan and I feel a small lump below my tooth almost on the floor of mouth. I thought well maybe its always been there, I keep an eye on it and the last couple weeks its gotten bigger and my face is numb and fullness in ear on same side. I have an appt with the same ent tomorrow. Im just trying to get some of this off my chest, What if this ent does not want to do a biopsy, do I go somewhere else or ask that he does it. Its been a tough few years. I lost my wife last march to pacnreatic cancer. Aperson so beautiful and didnt smoke or drink on rare occasion. I have been a dipper for thirty years. Drink ocassionally. I did quit the dip last year. Im just nervous that I might be going through this on my own. I seen what my wife went through and not sure if I can do this on my own. The lump cannot be seen but can be felt with my tounge. I went to the dentist yesteday and he thought it was bone but I asked him I dont think bones double in size in two weeks, he didnt have much to say after that and said if I want he will set up an appt with an oral surgeion. But I have the appt with the ent, tomorrow.
Thanks for listening
Dave

Hi Dave,

so sorry you have to deal with this after losing your wife. I hope that its just some sort of infection. However, i do recomend a biopsy. If ENT refuse then insist on one , even if its just for your own peace of mind. Crossing my fingers for a negative to cancer.

Minh

Dave, sorry you're going through this and indeed very sorry to hear about your wife. It just doesn't seem fair sometimes.

You're doing the right thing getting the lump checked out by an ENT. I second Minnie's advice to get it biopsied. Hard to imagine that the ENT wouldn't agree, although of course I'm not a doctor. But it seems to me that the biopsy is the only way to be sure, and it will at least give you peace of mind.

As far as going through it on your own. If you DO have to go through anything, you'll make it. I did a year of cancer treatments on my own. You find the resources. It's a plus if you have a good team, both medically and emotionally. You also have all of us here.

Keep us posted, and courage!
David2

Hey Dave.... Sorry you are faced with the possibility of this after losing your wife. It's not an easy road to travel, but if it is cancer everyone here is awesome as they have been through it all... Some several times. So you Won't be alone. With regards to the ENT... It would be rediculous not to biopsy it. If he refuses - which I highly doubtt, go somewhere else... Get it done... For your own peace of mind if nothing else. And it's a good thing you are on top of it. Don't let anyone tell you no. Advocate for yourself and educate yourself. Many prayers for you that you don't have this disease... Take care and good luck.

Thanks for the kind words and information. I am trying not to worry about it, but I am kind of a worry wart kind of person. It doenst help that I am on disability from the result of an accident back in 97 which I was paralized, I am walking now and do pretty good, just not working, so I have all this free time to sit and worry. The nice thing was I was at home and able to take care of my wife through her battle. I wonder lately if I do have it, do I even want to fight it. I so miss my wife and would love to be with her. Spiritually though I feel I would be letting God down by not fighting. I have always been a fighter, but now I just dont know. But who knows maybe I am freaking out for no reason, but I just have that feeling, somethings not right.

Thanks again

Dave

Welcome Dave. You are a fighter and you will be with your wife someday. Just not soon. You CAN and WILL get through this and the folks here (and myself) will help you. I am at the halfway mark of 7 weeks of radiation and started chemo today. I might have quit by now if not for the people here at OCF. Stick around and give yourself the best possible chance. It sounds like if this is cancer that you have gotten lucky and discovered it early before it bumps out in your lymph nodes. Stay connected here Dave. It's VERY importand and we CAN help you. God bless. Will Zinn

Hi Dave! I agree with the others and demand that a biopsy be done. If he won't then go get another opinion, seek answers to your questions until you are at peace with it.

So sorry to hear of your wife but wouldn't your wife want you to fight if it is cancer? You can do it and we are here for you!

God Bless!

4Real: You have already proven how strong you are by being your wife's caregiver. Pancreatic Cancer is a horrible disease, but you know that already. I am sure that your wife would want you to attack this with everything you've got and although she might not be with you physically, she will be the angel on your shoulder to see you thru this..... and your are being proactive so that's good. I am praying for you that this is not the big C...... could be many other things, you just need to find out to be sure. Either way you have found your way to best forum you could be in. These people are wonderful and have helped me a lot... I've only just begun the fight. I wish you the best... never give up.

Wow, this lump is crazy. Its gotten over double in just a week. Is that normal or typical of cancer tumors and the numbness is getting crazy also tounge is starting to hurt too. Oh yeah, this I didnt need.
I am thinking the worse right now. It must be agressive or late stages? But I guess Ive had some symtoms for over a year and never caught it. Now its rearing its ugly head.

Sorry, just feel alone and scared ##$@%

Dave

No one, as in NO ONE, can assist you until a bio is taken and read.

Get that done ASAP.

I see the ent today hope to get a biop done.

I understand no one can diagnose and treat me, I am just venting and freaking, sorry if I implied otherwise.

Dave

Vent away! Praying for a biopsy to be done and some questions answered for you!

Not to worry - a biopsy is primary - it's the only way to ease your mind!!!! Freaking will not help you.. Been there - it actually makes matters far worse.on a mental level. You need answers - and doubling in size is definitely call for a biopsy. It could very well be an infection... But better safe than sorry. Don't blame yourself for waiting... Self recrimination is a useless emotion you can't live a life riddled by what if ( I too have been there - ) what's past is past nothing can change it -It's what you do now that is most important.

Good luck today!!!

Good luck, please let us know how it turned out. Praying for the best..

Thanks so much everyone for your help. Here is where I am, I went to the ent, he felt the lump an said mandibular tori, the face swelling and jaw pain is tmj, tounge and neck pain is residual nerves flaming. I so hope that is the case but I said why not do a biopsy, he feels there is no reason and it would just cause more pain. He said if it hurt to the touch he would be more skeptical. Its about 3mm. So I get adamant that I want a biopsy, he then says he would like me to see an oral surgeon that they deal with and if he thinks I need one he would do it, he cant see me til monday. I asked why not just do the biopsy and he said he would like this guys opinion.
So Im looking for some suggestions. I so really want to believe this doctor, I think I am going to call my primary and ask her thoughts. I tried calling mayo they have not gotten back to me, they are usuall so far out not sure what to do.
Thanks for listening

Dave

Weird he's an ENT - he should have scheduled you for a biopsy then and there - get a second opinion.... A biopsy will not hurt to have. Really see another dr.

Good luck.

Morning!!
I talked to my primary physician and she agreed a second opinion would be helpful. I made an appt with ccc but thats a month out, ughhhh. I am trying to find someone sooner to check this out. Would a ct be helpful at all?
Thanks everyone

Dave

Yes... A CT would be helpful. My primary physician, sent me to an ENT - he did a biopsy, he was going on holidays for 3 weeks. I didn't want to wait. Went to my primary - got my results, he set up a CT - head and neck - then and there, blood work too. Then he gave me a referral to the top guy in Toronto, who fit me in the first week back from Christmas. My other ENT guy was just back that week - and I wouldn't have seen him for 2 weeks at least - then he would have had to book me for surgery that would have put me 3 or 4 weeks behind where I am right now. And given the cancer the time to grow and spread.

CTs do show inflammation and infection too though... Maybe a PET/CT I think the PET works on sugars and that might be more reliable in detecting a tumor... Because sugars are what feed a cancer. Maybe someone else here can correct me if I am wrong.

The ccc is great call them - ask to be put on a wait list.. Explain that your in pain and it's doubing in size rapidly and you are freaking out..

This may help. Otherwise have your dr. Send you to another ENT - and then call and ask to be put on a cacellation list there. Advocate for yourself. And push...

You don't want to wait.

Best of luck.

Thanks Cheryl, I am trying to get another ent, of course today is my primaries day off, so I have to wait til tomorrow, they were supposed to send off a referral yesterday, but I guess they didnt.

Dave

hey dave. sorry to hear about your wife. i dont think she would have wanted you to give up any more then she gave up.
i do know about the being alone thing and wonder how im going to do all this myself. you do have friends and support here from others who have or are going through the same thing.
it would be very wise to see another doc about a bio.
im the poster child for people who waited too long.
im new here myself ill try sending you a message on your profile page. i usually travel alone but i wouldnt mind some company on this ride.

Hi Rebel,
Thanks for the advice, today I got two appts scheduled, I got myself an appt at rochester mayo on tuesday, and my sweet doctor on her day off made sure her nurse got me in and thats on monday with an ent affiliated with mayo. So what do I do, cancel one or the other or go to both? Im leaning going to the one on monday and see what happens. So nice of my doc and of mayo to get me in. I hope for nothing but the best for you rebel, lets keep in touch.

Dave

definately go monday. if your not comfortable with what he says go to mayo tuesday. nothing wrong with a second opinion.

Hi, Dave -

What the ENT says sounds logical, but I also understand you want an answer.

I have a tori. I've had it for years. It seems to have gotten larger recently, but it's a tori.

What area of your mouth would be biopsied?

Good luck.

Marlene

Hi Marlene,
The lump I have is in the back of my mouth on my left side, it is below a tori I have on my gum line. I actually have quite a few tori on my gum line but this lump is under my molar right close to the floor of my mouth. you cannot see it you can only feel it.
I am just confused with all the different symtoms I have been having the last month. Ear, jaw, neck and facial and even some tounge pain, all on my left side. I hope the ent I seen was correct I just want to be sure.
Thank you
Dave

Cancer is no time to be a loaner... People care - and want to help - let them...

Hi Cheryl,
I so agree, I take everything in here to heart. I think all of you are heros in my book. Its because of the people here that I have been pushing for more answers.
Peace

Dave

Hi David. I'm sorry you've lost your wife and that you're facing this without her support. But just as you supported her with great strength, she would want you to keep the same strength in caring for yourself. Please insist on a biopsy immediately. My mom was very patient with all of the tests & referrals to many doctors. She eventually saw an oral surgeon who performed the biopsy that diagnosed her with Stage IV OC. With prayers and very supportive, talented drs. her OC has not returned. Stay strong and keep your determination and faith going!

Dianna,
thankyou for your some inspiration. I really need it. I do have an appt on monday and tuesday, the one on tuesday is with a ccc so I feel I will get the answers Ive been dreading to find out. So glad to hear you mother is doing well.
My faith has never diminished, if anything it is stronger. It is hard playing the waiting game, I pray for patience.

Take care
Dave

Dave - I'm so glad your appointment is tomorrow. You've gotten such great advice above. Try to keep busy until tomorrow so that your mind does not go to all the negative "what ifs". The waiting is the hardest part and until you find out for sure what is happening, it's better to fill your time pushing away the bad thoughts and trying to find all the ways that things could go well.

Thankyou Anne-Marie

I just got home from mayo. The doctor there is not worried about the lump he says it does not feel like a cancerous tumor so he said to keep an eye on it. As far as the pain I am having, he wants to do an ultrasound on my neck and go from there. He thinks the ultrasound will be normal. He is thinking alot of the pain is neurological. So if all tests come back o.k, crossing fingers, will have to see a neurologist. Thanks everyone, will keep updating.

DAVE

Sometimes a lump is just a lump. While I know the relief you feel at the moment, and I am certainly not suggesting you get too intense about it - keep an eye on it yourself and if it changes get back to your doctor. In the meantime - celebrate!!! Glad to hear the good news. Donna

Agreed - good news is always a plus but do keep an eye on it!

so you must live somewhat close to where i live if you went to mayo...i had my treatment done at u of m in minneapolis.
I had a great doctor there. But I have since moved to fergus falls MN, which is 3.5 to 4 hours west of u of m on 94. Just wanted a change in scenery! I hope that it is just neurological.

But even if it is just what that ENT said, are they going to do anything about it? My dad had surgery for his TMJ. And if yours is so bad that it is causing facial swelling and what not, wouldn't you think they would do something about it? I sure hope so.

Nerve pain can be a big pain in the butt! Also, minds like to play some pretty nasty tricks too. Not saying that is what urs is doing, but since my treatments have ended, I get these pains after my scans show new "activity", and I hate my brain for doing that, lol.

Hope your ultrasound comes back with no issues!!

Hi Bethers,
I live in wisc, a couple hours n.e of rochester.
Rochester is an amazing place. Just dont want to be there. My wife had her surgery at the U. They are great people there too.
If all comes back clear for cancer, I think they want to get a neurologist involved to figure out whats going on.
I did have a severe back injury quite a few years ago, but the damage was in the lower back, but maybe I also did hurt my neck and now I am getting some nerve damage.

Thanks and best wishes


Dave

Thanks everyone so very much for your help and information.
Ultrasound came back good, one enlarged node, but clear.
Tounge pain is slowly gettting better, prescription for lidacaine.
On to see the neuro next.

God Bless

Dave

are they going to biopsy the enlarged node at all?

They said they didnt need too.
Is that something they should?

Dave

better safe then sorry. if it was me i wouldnt get the biopsey.
we all know how that worked for me last time
but if your comfortable not getting a biopsy then dont.

Yes... I would agree. An enlarged node is definitely something that would make me push for a biopsy. Best to be safe.
Some people have been diagnosed, when a node showed cancer but they couldn't find a primary.

It won't hurt to be sure. Good luck

I wonder why the doc at the ccc, didnt recommend it. The way he talked about it, it was like no big deal.
Ill have to give him a shout next week.

Dave

Don't know but I would call him.

well an enlarged lymph node can be many different things. A biopsy is just a way to be safe and know everything that is going on! My docs didn't biopsy before my surgery, and they just removed 40 lymph nodes and then did the biopsy, but they had a pretty good idea just from my scans that it was cancerous!

I prefer it that way actually - call me crazy but I believe in the primary is boss theory - if you cut a chunk out of it... Then any other cancer cells that may be there but are laying dormant - jump into action because the boss is now disabled. Hence the rapid spread at times. That's why when they mentioned e 3 mm node that had highlighted on the baseline scan for my radiation - I told them not to biopsy it - probably too small - and knowing it could be anything - not necessarily cancer - I said fry it anyway - so - they rewrote my radiation plan to include the right side. (my lesion and one cancerous node were originally on my left side) but this node with attitude was on my right. I just wanted it nuked.
No cutting - no waiting for results... Just cook it.

Well to update, I talked with the doc at the ccc last week and somehow we got the enlarged node all wrong. The ultrasound was good. So I dont know where I went wrong in my hearing but anyways thats good. So went to my primary and talked about where to go from here since Im still having many issues.
She made an appt with me to see a physical therapist. I went today and she checked me out and said my neck was horrible, and that I probably have a pinced nerve causing my neck, ear, teeth pain. So I will keep an eye on everthing and continue with the therapist for work on my neck.
Thankyou everyone for your awesmome help
I will keep updating and checking on some of you

Dave

Dave Im glad to hear you are ok. You are very fortunate that you do not have cancer. I know you have some issues but I would gladly trade with you any day! Hope you know how lucky you are!!!! Best wishes.

Thankyou Christine,
Yes I feel very fortunate, I will keep an eye on my tounge for sure. I seen what my wife went through and have heard many stories here from so many strong people.
Prayers for all from patients to caregivers

Dave