Previous Thread
Next Thread
Print Thread
Joined: Apr 2017
Posts: 2
Member
OP Offline
Member

Joined: Apr 2017
Posts: 2
Hello,
I will start by saying I have not been diagnosed with oral cancer. However, I have been lurking on here for about a week reading as much as I can. Here is my situation: For the past 4 years I have had chronic ear pain/pressure, facial tingling and pressure behind my eye on the right side only. I also have a soft, movable lymph node that popped out on the right side of my neck several years ago. Additionally, I have constant dizziness.

In 2014, I became very concerned about both of these symptoms as possibly being OC. I saw two ENTs (not OC specialists, just regular ones that see mostly kids). I saw the first about the lump in my neck, which he told me was "fine" and not to worry. I repeated my concern about OC and my continued ear pain/pressure. He scoped me, said he found nothing and told me to stop worrying. Still not convinced, I saw another ENT about the lump for a second opinion and my ear pain. I specifically asked about a biopsy of the node. He said he could, but it would only be for "anxiety" reasons.

In 2015, the continued ear pain, lump in neck and now right-sided throat/tonsil pain prompted me to again see the second ENT. I repeated my concern about OC. I scoped me and told me everything looked fine. He reluctantly ordered a CT scan. My insurance denied it stating I must have a "medical reason" for the scan. I also tried seeing my regular GP. He also ordered a CT scan, but again it was denied by insurance. I gave up and tried to move on with my life.

Now, in 2017 I became scared again and decided to try one more time as the ear pain/pressure and facial tingling has become constant and more painful. The right-sided throat discomfort also continues daily. Most days it is simply discomfort/feeling like something is tugging on that side of my throat and pulling on my right ear. However, when I have had a cold or viral sore throat, the right tonsil becomes MUCH more painful than the left and takes longer to heal. I saw a third ENT who works for a research hospital. Again, not one who specializes in OC though. I tried, but they wouldn't let me book an appointment with that one. Once again, I explained my symptoms, that I know I have likely been exposed to HPV and my concern about OC. He used the endoscope on me and, like the others, said he couldn't see anything of concern. He diagnosed me with migraines and sent me on my way with a migraine prescription.

A week later a very hard, bony lump has now appeared on the right side of my palate. It isn't painful nor is it discolored. However, I know it was never there before. As you can imagine, I am very scared, frustrated and confused. I can't get anyone to biopsy my tonsil, neck lump or get a CT scan. I know you good people can't give me a diagnosis, nor is that why I am posting. This new hard lump on my palate now has me truly scared. My anxiety level is now so high I have not slept properly in weeks, I have no appetite and my husband is at his wits end with my worrying. My question for you is, how should I proceed in order to get a biopsy and/or CT scan? I feel like I've been dismissed as hysterical while my symptoms persist without any concrete tests being ordered. How can I get the biopsy I need? How can I get my insurance to finally approve a CT scan? Any advice you can provide would be very much appreciated.

Thank you.

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF! Im sorry you are not being listened to at your different appointments. I cant imagine how frustrating that must be!

As you already know all this stress is only making everything so much harder on you. Maybe try looking at this from a different point of view? Worrying has never, ever gotten anyone diagnosed or changed a test result. All it does is make the patient feel so much worse. Not eating or sleeping is not helping you in any way. Please do your very best to avoid the worrying and negative thinking, its only making you feel so much worse. When you find yourself "going there", limit the time you spend on it and then physically get up and "change the channel". I mean go do something positive that you must concentrate on. When I first was diagnosed with OC almost 10 years ago, thats how I managed to avoid worrying. I had the cleanest closets in town too smile Over the years Ive seen hundreds of people come thru here upset, stressed out and scared they had OC. Most of these people luckily did not have anything serious going on. I genuinely hope you wont either!

Many of the people I mentioned above had "known" they are HPV+. Many things are not known about HPV, but we do know most of the adult population has it at one point or another. Research is still being conducted to learn more about HPV. Most people can clear the disease without it ever going on to do any damage. Only a very few strains out of hundreds can go on to cause cancer. Even if someone has the cancer causing HPV strain, it still does not mean they will ever have it turn into cancer.

If you have been here reading posts, then you probably have come across our saying... "any mouth sore that does not heal on its own within 2 to 3 weeks should get checked by a professional." The latest problem you have may very well resolve itself on its own. Its very common for OC patients to have no symptoms at all until they are Stage IV. From what I know, dizziness could be related to blood pressure (or many other ailments like TMJ, vertigo, ear infection, etc) and one lymph node being swollen a couple years ago probably isnt anything serious. The things you have mentioned by themselves may not be anything serious. Putting them all together could be a sign of something not being right, but.... with the worrying and stress put into the mix it might not be anything serious either (at least I hope not).

I would suggest seeking out another ENT who treats OC patients ---- NOT kids. Dont allow the office scheduler dictate how serious your condition is. They arent in your situation, they arent scared or upset and worried. But... even though the person making your appointment doesnt completely understand, you may want to keep that to yourself. Make sure you "kill them with kindness" and be as nice and polite as possible. Ive found being pleasant greatly increases the chance of getting exactly what you want. If they still wont give you the right doctor then ask why not. Many ENTs who treat OC patients are super booked and it can take weeks to get and appointment. I would also contact your medical insurance company and let them know everything you told us about your lack of care and ask them to help you too.

Once you have the appointment then your real work begins. Especially if the doctor isnt the type to listen. You have only about the first 2 minutes to explain whats wrong before they tune things out and only half listen. Plan what to say and get the most important things out there first so they pay attention to your concerns. Without a suspicion of a serious illness its doubtful you will get a CT scan. I hope in the future you find the right doctor to take you seriously and work to find a reason behind your symptoms (hopefully NOT cancer).

Best wishes!!!


PS... April is oral cancer awareness month. We have many professionals doing free OC screenings all over the country. Maybe theres one near you? Thats something you should check into.

OCF Events --- April free OC screenings



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 2017
Posts: 2
Member
OP Offline
Member

Joined: Apr 2017
Posts: 2
Thank you Christine for that very kind and helpful reply. All of your advice is very helpful, and I'm going to try to keep my mind occupied as much as possible over the next couple of weeks. I have an appointment with my dentist tomorrow to show him the lump in my mouth. I also have an appointment with my GP on May 1. My hope is that if my dentist feels the lump is suspicious, then that is more evidence I can take to my GP who might be able to then help me get the appointment with the OC ENT and get the biopsy and/or CT scan. Thank you so much again for your suggestions with getting appointments and talking with insurance. I greatly appreciate it. All the best to you as well. smile

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
You're very welcome! Im glad I was able to help you.

Have you checked to see if there are any oral cancer screening events going on near you? This would be the quickest way to get thoroughly checked and referred to the right place. Dont be surprised if your dentist and GP are not able to help. Most dentists have rarely looked past a patients teeth to notice anything suspicious. They have not been educated enough about oral cancer and unfortunately most do not bother to look for it. I can only hope your dental office provides all their patients with yearly OC screenings, often its done by the hygienist. Pretty much the same goes for GPs. They focus on the body and most common ailments which OC definitely is not. Most GPs dont look in a patients mouth unless they are looking for strep throat or another similar illness. I would hate to see you waste time with a dentist and GP who are not in the position to do much to assist you in getting to the bottom of what is going on. Please continue to try seeking out an ENT who treats OC patients so you get the most experienced person to take good care of you.

Please let us know how you are making out. Good luck!!!!


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

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5