Hi
This is my first post. I have been lurking a couple of weeks trying to gather information.
I have an appointment with an ENT tomorrow.
Started having vague symptoms about four or five months ago.
I was just feeling extra tired and a lot pain in my upper back. Since I have degenerative disc disease in my neck I thought it was just progressing down the spine. It was bothering me enough to see a doctor and they ordered an mri which didn't show anything to warrant the amount of pain I was having.
Four weeks ago I noticed I was having trouble swallowing my breakfast. I looked in the mirror and my tongue was very swollen. I coudln't even see the back of my throat. Also I have a lump on the side that has been there for over a year that I had ignored. My tongue now was very mishshaped on that side. I went to the er and they gave me a shot for an allergic reaction and script for predisone and benydryl. A couple of days later my tongue was less swollen and I started looking in my mouth and noticed I had lesions with dark purple/red in the back area of the tongue. I also noticed white patches on the tonsils, behind the molars and roof of my mouth.
I saw a nurse practioner at the clinic and she prescribed penicillin. I have just about finished it, 2000 mg per day and my symptoms have just gotten worse.
My throat hurts like strep throat, I have sharp pains in my ear,some ringing,my jaw is tender to touch and my voice gets hoarse very easily.. It is very hard to eat and I have no taste or everything tastes the same(lost ten pounds in two weeks). I only eat soft foods. My tongue and roof of mouth which look the worse are not painful.
The lymph nodes in my chest area are very painful to touch but not in my neck.
I'm hoping there is a logical explanation for all this but since I have had the herpes virus for ten years and this has all been going on for about four weeks I'm consumed with panic. I'm hoping for a biopsy tomorrow. What questions should I ask the doctor?
Any thoughts?
It is on both sides but much more severe on the right.
I have looked at a lot of photos and to my dismay the ones with SCC look very similar to what I see in the mirror.
Of course I know it is not cancer until a biopsy says it is.
My blood work looked good other then elevated liver and having some very high bp issues. It was 215/115 at last clinic visit.
They have also scheduled a diagnostic mammogram.

I'm 54, have no health insurance or job and limited resources.
A local clinic and hospital are working with me so far.

Sorry for the long post.
I'm so hapy that this place is here. Information is a powerful tool.

Thanks for listening
Brenda

Hi Brenda, Welcome to the forum. I sure hope you get a good report tomorrow! Will keep you in thoughts and prayers.

Dodie
Also in NC

Thanks Dodie

No matter the outcome I will certainly always feel more grateful for the many things I take for granted.

Brenda

Brenda,

Good luck tomorrow insists on a biopsy don't take no for an answer. I wish I knew back then what I know now.

Brenda, welcome to OCF. I hope you have a good appointment tomorrow with the ENT. Hope they will do a biopsy and then you will finally know what is going on.

Thank you Connie
I do plan to be aggressive in my plea for a biopsy. He will have to have a very strong arguement or firm dx for me to back down.
I have been through a lot in my life but nothing has ever frightened me more then this.

Not to sound harsh to doctors and what they do as I'm sure I have no idea what they face day to day but I do have to wonder how many more would be alive and especially how many would have suffered less if that one extra test had been done or ordered.

Brenda

Hi Christine
First of all thank you for all the support you give the members here. I have been lurking long enough to know you are a very generous and caring person.

Yes, I'm very worried because I have way too many symptoms that match for oral cancer and it isn't just that but it is the way I feel and a gut feeling.
I remember once being called back after a mammogram for another view and ultrasound. They decided I was fine and the nurse said don't walk but run out of here. You don't know how lucky your are!!
I hope tomorrow I hear something very similar.
My nerves have certainly taken over!!

Do you know how long it usually takes for biopsy results if they do one?

Brenda

Don't walk out without a biopsy. Mine took 7 days to come back.

Good Luck keep us posted.

Brenda first of all you are in the right place. I have been lurking and reading for about 2 weeks and this is my second posting, I am glad I came in tonight.

I too have had an experience with mammography that turned out alright at the end of the day, I understand the experience Brenda. And I understand this experience as well, especially the fear you are living with right now. You are doing the right thing facing this and going forward. I sat in front of a board in my early days of wondering what was going on, I too was scared and they guided me thru gently.

May I suggest something for your appointment tomorrow? Write down in point form the symptoms and timelines so you hit the high points with your ENT, he/she will get a clear picture and be able to help you better. You don't want to have to rely on your memory when you are not feeling well and/or nervous.

Brenda keep coming in and posting, I know it helps and we want to be here for you.

See you tomorrow I hope.

Light and blessings,

Nancy

Hello Meggie

I'm happy you visited here today also.

I read your previous post and see you are recovering from surgery. I'm sure when you are ready you will share your story. For now I wish you a speedy recovery and the best possible outcome.

I'm with you on something needs to be done to raise the awarenesss about oral cancer. If I had known more certainly I would have had that lump on my tongue looked at a long time ago.

Great suggestion to make a list.

Yes, I will share how my visit goes tomorrow.

Thanks for the support it really helps. I have no family or close friends here.

Brenda

Hi Brenda- Good luck with your Drs. visit. I am thinking of you and hopingfor the best outcome possible. LOVE Kate

Hi Brenda, Welcome and good luck. Keeping you in my thougts.

Wendy

Update after the visit with the ENT doctor.

I still can't believe it but I did not have a biopsy today.

The doctor convinced me he does not believe I have cancer at least of the head/neck.

He said he could find no masses that were suspicious looking and my lymph nodes were normal. He ran the tube down my nose to look at my esophagis and he said although it was blood red he didn't see a mass or unusual swellling. He said I will do a biopsy but you tell me where since you don't have a mass. I don't think you need one and I'm pretty positive it would come back normal but if that will help you sleep tonight I will do it.
He said he thinks I have acid reflux which is kinda of a joke since I have only eaten soup and oatmeal in very small portions for two weeks. He could not explain my ear pain, numbness in mouth,no taste or reason for lump on tongue.
He said the lump was soft tissue normal color so not concerned about it, but it has changed the shape of my tongue and been there over a year.
I said I would wait two weeks and then seek a second opinion or call him back for a biopsy. I did ask if I had cancer in another areas what would be the chances of this being a metasis and he said that could happen but very rare.
So for now I will monitor my symptoms and wait and see. BTW I have taken photos three different times just in case I need them down the road.
I'm not sure if I'm being overly paranoid. I felt the doctor was honest, caring and kind.

Thanks for everyone that posted as it really helped me a lot. I was in a total panic. I'm still worried but feel better.
Did anyone here have cancer and no visible hard mass?

The story does get a little more involved which I may go into on another post after I gather my facts .

I'm very grateful that this place is here for support and information. The courage of the people and what they have had to face leaves me in awe.

Brenda

You can always get another opinion. Not saying our circumstances are similar but I ended up going to 4 different docs before one took a FNA and ended up getting 5 opinions before I allowed someone to treat me.

Hi David
Sorry this has been such a difficult journey for you.

I'm not sure if this is fate or someone trying to tell me something but my daughter called last night and said my granddaughter was doing a school project and needed a list of three generations and all their illnesses. Strange timeing!

It is a long sad story but I haven't seen or heard from my father since I was four and found out he passed away on his 62nd birthday the year before I found the info on the internet. I was able to obtain his death certificate.
For some reason I had thought he died of a heart attack but today looking at the certificate it says he died of throat and lung cancer. Of course I'm sure he was a smoker and lung and throat cancer are common. The thing is my daughter also had cancer of the thyroid in her 30's.

btw my fathers name was david!

I just find it a strange coincidence this was brought to my attention the day after my appt. with the ent.
Wonder if I'm reading too much into this.

I'm having two more tests next week so maybe I will know more soon. The problem is I have no regular doctor. I go to a free clinc and they work with doctors that reduce thier fees but whenever I go to the clinic I see someone new and usually nurse practioners. I'm very happy and grateful to be getting the care I'm getting but it does make me anxious not having someone putting the pieces together(A primary).

Lastly just to make it all more puzzling there is a possibility I have NF1. The neourolgist I saw several years ago for severe migranges was hesitant to dx without three onfirmed findings. I only have two that were found.
The common cafe au lait brith marks and scoliosis.
Still looking at at info on this sight and others there are soft sarcomas especially with NF1 and I wonder if all ent would be able to recognize cancer from a rare disease that does sometimes present orally.

It is a lot for my little pea brain to take in!




Thanks for your help!!

Brenda

Thank you Wendy

Good nes I guess but still not convinced. Will post as I continue to search for answers.

Brenda