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#198446 06-02-2019 03:28 PM
Joined: Apr 2019
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Dream Offline OP
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Hi everyone,
Just a little about me. I am a single mother to 3 great kiddos. I have an 18 year old daughter, 12 year old son and 9 year old daughter.

Back at the beginning of March I started having to clear my throat a lot due to phlem..I didn't think anything of it because I usually do not get sick and when I do I can usually take an antihistamine and it's gone the next day. However this time it stuck around and then a week later I developed smalls viral bumps on the roof of my mouth and had a sore throat for a week thereafter. I ended up going to the Dr. who thought that I had Strep throat or the flu and so they tested me for both came back negative. So he decided to put me on antibiotics anyway. Antibiotics ended up not helping and I called the Dr. who then put me on Prednisone. I took all of that and it helped a while until after I ran out and then I felt worse than ever. Very bad sore throat came back along with a sore tongue in the back part on both sides. I went back to the Dr. who again tested me for Flu, Mono and Strep and all were once again negative. The Dr. is stumped at this point and put me back on another round of antibiotics and steroids. Again, after all of this I was back to feeling extremely bad again. Sore throat, sore tongue and I started developing ear aches. I decided I had enough and called the Dr to refer me to an ENT in my area. I went in and they checked my throat and he said I had a little bit of displasia in the back of my throat but nothing to be concerned about. He checked my ears and nose and nothing looked out of the norm he said. He did set me up for an allergy test and that is coming up soon. I have a cat that we got about a year ago but he doesn't seem to think it's allergies from the cat as this should have started right when I got her. However, I'm still scheduled for it but since we literally have no allergist in my area except one I can't get in until July. frown

I also had a cancer scan of my entire mouth by my dentist and everything came back normal although I'm not sure if he actually scanned my tongue since he wrapped it and was pulling it side to side to look at my mouth.

So I kept going for another week thinking well maybe it's all in my head but the ear aches, sore throat, and tongue continued to hurt and I felt like I was eating Tylenol like candy. So I made an appt with another ENT that had very good ratings a couple of hours away from me. He scoped my throat and scheduled me for an ultrasound of my neck. The scope ended up showing nothing and the ultrasound came back showing only swollen lymph nodes. But they didn't seem to concerned about the lymph nodes. But I am just wondering what is causing these? I feel like it has to be something and I'm really scared.

So I went another week and now there is pain not only in my ears, my throat, my tongue but also my neck and jaw. I tried calling the ENT back that is a couple of hours away..left a couple of messages and still have not received a call back. I am really worried and I feel like if this is cancer it could be spreading at a rapid rate. Does anyone have any suggestions on what I could do to get additional testing and quick? The ENT that was here in town doesn't seem to want to help at all and the only other ENT's that are in town are in the same ENT's office.

Thank you all in advance for any suggestions and just for your support. Hope everyone is doing well.

-Dream


Last edited by Dream; 06-02-2019 03:32 PM.
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Im very sorry to read about everything you have gone thru to figure out what you have going on. Sometimes patients go thru alot of testing to narrow down what could be causing all their current issues. Maybe its a couple different things? None of us here are medical professionals so unfortunately we arent able to help you very much without a diagnosis. Everyone knows their own bodies the best and they know when something is not right. Putting all those clues together can be a real challenge!

Oral cancer is not a common illness. Sometimes its not easy to diagnose either. Many of our members who did not have a visible tumor went thru similar frustrations in their search for a diagnosis. On the other hand, Ive seen many come thru here all complaining of similar symptoms and having a tough time finding out whats happening only to find out its NOT cancer. This has happened to many new members who were absolutely certain they had cancer, luckily the didnt. Unfortunately oral cancer frequently does not have many clear cut symptoms that show up when a sore, spot, red or white area are not visible. Many do not have any pain at all, I didnt. While others will have different things bothering them. Sometimes, the more someone thinks about something the worse their symptoms become. With so many symptoms, its hard to know what the best place to go would be. It sounds like you must be in a rural area without alot of choices with medical professionals. If you continue looking for the right doctor to find whats going on, I suggest an ENT the specializes in treating oral cancer (OC) patients. You do NOT want to end up with an ENT who mainly puts tubes in young childrens ears as they probably have not treated many with OC! Another avenue would be to call your insurance company and ask for their help in finding the right doctor who is not affiliated with the ENT's office you already went to. Cancer centers are the next step after a diagnosis has been made.

Heres a link to the main OCF site with helpful info. I suggest reading the Oral Cancer Facts and Discovery/Diagnosis sections to help understand oral cancer more. I wish I had more info to help get you into the right doctor for the right kinds of testing to get to the bottom of whatever is going on. I wish you all the very best, please let us know if you how you make out. If you are diagnosed with oral cancer we will do our best to help make it as easy as possible. Good luck!!!

Main OCF Site, Understanding



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2019
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Dream Offline OP
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Since the beginning of March I have had all the symptoms of oral cancer. I have been to several Doctors and everyone of them tells me it's not cancer or they want to do other tests besides checking for cancer. I have had throat cultures, I have had blood work, I have had oral screenings but yet I still have every symptom of mouth cancer and the Doctors now want to test my zinc levels. I feel like all of this is costing me so much money and we are getting nowhere. I have even expressed to my doctor's that I have all the symptoms of oral cancer but as usual I'm laughed at and told that I'm too young to have oral cancer. I feel like I will never get an answer and by the time I do it will be too late. I have 3 kiddos that I hope to see grow up and have their own. I have so much to live for and I feel like Doctors do not take me seriously! How did you all get a diagnosis and how long did it take?? My mouth hurts..tongue is so painful....throat has hurt since the beginning of March and my ears hurt. I have also had an ultrasound and it came back with swollen lymph nodes but when I go to the doctor they say it wasn't nothing to concerned about. I know my body and I know something is not right. I just wish I would be heard. cry

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Hi Dream. To answer your question, I met my ent on Aug 2nd and he provided a preliminary diagnosis of oral cancer (squamous cell carcinoma) in his office at the first visit. He ordered up an mri, a ct scan and a biopsy to confirm his suspicions. The pathology report was received yesterday confirming his diagnosis- so 3 weeks from first appointment to firm diagnosis was my experience.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Joined: Apr 2019
Posts: 11
Dream Offline OP
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Hi Barry,

You are so lucky to have found someone that new exactly what was wrong. I am going through test after test and the Doctor's won't listen to me. Everything that they test me for comes back normal just like I thought it would.
The lady at the Doc's office just called me and said good news on your test results that it was negative but that is not what I want to hear. frown I want answers before it's too late! I have every symptom of cancer but since I am considered to young and I don't smoke they say that it's not. I only wish we had Dr's in our area with great expertise as what you experienced.

Joined: Aug 2019
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You are right, and I do feel lucky. When I met my ent yesterday and he gave me the biopsy result, I thanked him for being on the ball and getting the “ball rolling” quickly in terms of diagnostic testing.

Oh, and the ct scan also revealed a grape sized tumour on my pituitary gland. Suspected to be benign because I exhibit no symptoms but I am going to visit a neurologist to discuss. Obviously alarming, but I have some confidence that I’m in good hands.

Good luck to you in finding out what’s ailing you.

Last edited by Barry Toronto; 08-23-2019 07:07 PM.

Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Joined: Apr 2019
Posts: 11
Dream Offline OP
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Joined: Apr 2019
Posts: 11
Just wanted to give an update on what has been going on.

Got my zinc levels back and they are normal. Went back to the ENT in St. Louis as he wanted to look at my mouth and he said that there was nothing else he can do. I even asked if he could maybe do some sort of scan and he dismissed it saying it wouldn't show anything. I left in tears as I drove 4 hours just to be told that there was nothing else he could do. He referred me to an oral surgeon, however I cannot get in to see him until the end of the month as they are pretty booked up.

I also went to see another ENT in my area as my PTO is about gone now from all the appointments that I have had and he diagnosed me with glostittis without any testing. I also asked if he could do a CBC or some scans and those were dismissed as well from him also.

I went to my dentist again and he looked in my mouth and diagnosed me having burning mouth syndrome. My mouth doesn't burn...it's just painful.

I had to go to Dallas for a business trip and while I was down there they have those magnifying mirrors in the hotel bathroom. I looked in my mouth in the far back and there in plain sight was a very large bump where it has been hurting. I saw this a week ago but since I was on a business trip and we were booked with meetings there was no way for me to see a Dr.

My symptoms were originally ear pain, tongue pain, sore throat and now I am having really bad swollen pain under both sides of my jaw down into my neck. The neck feels extremely tight. I almost went to the ER this morning, however I didn't know if they could do anything or if it would just be another waisted visit. I am going to call a different dentist tomorrow and get a 2nd opinion since I haven't been to another dentist since this has occurred.

I wish there was an ENT near me that actually specialized in oral cancer but there is not. frown I really don't know that anyone here even knows what to look for as I live in a small town. Please keep me in your prayers!

Praying for you all as well and hope you all are doing well

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Hello Dream!

I'm in the STL area and went to Siteman Cancer Center for my tongue cancer. You can call and book an appointment with an ENT there. If it's cancer then you get referred to one of their surgeons. I actually went to Dr. Matthew Page at the Midwest ENT Centre because they were able to get me a next day appointment and he biopsied my tumor on the spot. My original appointment was with an ENT at Siteman but it was a month out and I wasn't willing to wait any longer to find out what the growing bump under my tongue was. So really you could call Midwest ENT, they will get you right in or wait and go to Siteman to be seen by an ENT that definitely should be able to get to the bottom of what is going on.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Joined: Apr 2019
Posts: 11
Dream Offline OP
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Posts: 11
Thank you so much for the information. I am definitely going to give them a call and get in to see them.

Thank you again! This def gives me some reassurance as no one seems to really know anything around my small town.


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