I have recently been giving a good report after two ct scans, tonsillectomy
And a few biopsies in back of my throat. However, I am in no way convinced
That I do not have bot cancer. I have severe throbbing pain in
My right bot area, right ear and tonsil and I do mean severe. Is it possible this cancer could have been missed by scope, biopsy, ct and scan. Something is not right. I thought bot cancer could be felt or seen visually most of the time. Please help. I have been to qualified ENT's.

BOT is not usually able to be seen. Most BOT patients have no symptoms at all which is why its normally not caught until the later stages. BOT cancer is not like other oral cancers as its deep in the throat. Its not at all like the for example the inside of a persons cheek is easily viewed.

Ive seen everything you have gone thru as far as tests go and at this point I can only ask you to ask yourself a question. Will you ever be able to trust the doctors who have examined you and given you tests? From what you describe, you do have something going on. What it is, I couldnt even begin to take a guess at. The only thing I can suggest is to see your family doctor and ask for a complete physical. It could be any number of things going on besides OC which only a medical professional would be able to detect.

I wish you all the very best with this! Honestly, I dont think after all the tests you have been thru that you have oral cancer. But remember, I am not a medical professional and the other members here arent either. Sometimes in life you just have to put your trust in others as in the doctors who have already checked you out.

Best wishes with everything!

Christine, I appreciate your response. If these symptoms are all pointing towards BOT cancer then how is it diagnosed? I have a complete understanding of where BOT cancer is located as my ENT showed me while scoping my throat on video. I actually can touch this area to my doctors amazement. The question I have is can this cancer not be seen on CT, or through scopes and it be there? Obviously, there are numerous people who had BOT symptoms as I have researched the Internet and most all had symptoms identical to mine. The doctor thinks I have neauralgia which actually can be caused by a tumor. Would a MRI show more than CT scan. Both my doctors recommended CT's. The pain is awful and there are not a lot more things it could be. I have been tested for allegies, scoped for reflux, dentist, oral surgeons and so forth and I know something is there. Please anyone with advice please let me know your symptoms and if your tumor could be seen or felt by Docs or CT scan. I'm not crazy and know there is something wrong and I feel My gut is right on this. Thank you.

Portland,

A tonsillectomy and biopsies of your tongue and throat proved to be negative. All this done by "qualified ENT's". That's the most definitive way to detect cancer. You had surgery a couple of weeks ago. All tests came back negative. The back of tongue area takes a long while to heal. There are chunks of flesh gone from there because of the biopsies. You're still healing!

I concur with Christine. My goodness man! Be happy you don't have cancer! Perhaps speaking with someone about your health anxiety about cancer would be prudent at this point.

Positive thoughts and prayers.

"T"

I'm going to agree here. Your concerns are real but there is such a thing as a self fulfilling prophecy - be relieved that based on the opinions of qualified professionals you are cancer free (including normal diagnostic tests to back them up) - also do keep an eye on everything and if things get worse then go back and have them continue to check you again...

Randomly select any disease in a medical journal, and you will probably have symptoms for that, and if you keep looking, probably hundreds more too. Leave the diagnoses, testing to the professionals, which are your trained doctors, and not Dr. Google.

Good luck.

Dude,

PLEASE, with all due respect, I understand your anxiety but you don't have cancer. If you want to focus on health issues, I suggest you seek a psychiatrist who can prescribe treatment and medication.

It's sort of sad to see someone who doesn't have cancer bouncing off the walls here and honestly, to me, it is quite disrespectful that you seem to have no consideration for those here who are battling cancer, suffering brutal treatment, suffer serious side effects, truly worry about death and dying, worry about the effect their lives have on others around them, and those who can no longer post here because cancer killed them.

I am sure there are forums better suited to those with anxiety disorders and amongst those peers you will surely find the support you desire.

Again, absolutely no harm or disrespect intended; just honestly trying to help with some guidance and direction to better health.

don

Hello,
I'm very sorry that I have come across as disrespecting someone on this board. I have prayed continually for each of you, and will continue to do so. My symptoms are real, and I was told by many of you that this type of cancer is easily missed by CT scans as well as scopes for qualified doctors. I'm not crazy and I thought this forum was for encouragement because this cancer is so easily overlooked, especially because of my age and that I don't smoke or drink. I know I have had a biopsy which can easily miss areas of concern. Once again, I'm sorry to bother anyone on this site. I will continually pray for your healing and hopefully for your understanding in my journey into what I believe to be BOT cancer. Please accept my apologies and I will find support from somewhere else.

i totally understand everything you are saying and i do agree that we are a part of this forum looking for advice and similiar stories. I too feel alot of what you are feeling and i do wonder if what the doctors are stating are conclusive. You definitely have had more testing than myself but i am suffering the same way and will look into further testing as well. With no intent to disrespect anyone because we all know this is quite a battle we are just looking for encouragement and support. I hope that this does end on a positive note for both you and myself but i do have to admit that i also am positive that i have the big C. i too thought the scope would be a great tool until i read one of my responses and now i am once again second guessing the results.

I also hope you don't have the big C. Don't give up with your testing because honestly it is a hard cancer to find. I called a specialist at MD Anderson and they agreed it can be very difficult to diagnose. I have read story after story of this cancer being missed by scopes, CT scans and even pathology. So, please if you believe you have this cancer, please pursue further testing despite anyone's advice. I'm not crazy and the pain is real. Some people don't experience pain, but some have excruciating pain. Thanks and good luck to you.

Stef and Portland:

The discussions that happen with respect to OC being difficult to find is more associated with your GP's - mine missed mine, but both a dentist and my ENT knew before even having the biopsy done. The biopsy simply confirmed. If you are seeing a qualified ENT and the biopsy(s) are negative, then you need to have some faith that they are accurate.

I know that when I go for my scans in a month, I am praying for the results you got. I think that is what Don was getting at - we all hope for your results.

[quote=tina77]my ENT knew before even having the biopsy done. The biopsy simply confirmed. [/quote]

Likewise Tina,

I was fortunate that my GP was suspicious from the get go. We treated my swollen lymph node with antibiotics twice. After the 2nd round, tests were ordered and things happened in quick succession after that. When I went to the ENT, I wanted to know straight up what he thought based on his experience. The CT confirmed the masses in my neck prior to my visit. He scoped me and when he was done, he looked me in the eye and said "This is cancer. I don't know what type but I've seen enough of it to know". A FNAB confirmed it as well as the subsequent PET scan.

If I had heard "I don't see anything unusual" or had gotten biopsy results that said "no cancer" I would be jumping for joy! As survivors, we live with a certain amount of fear in the backs of our minds. That's to be expected. But if we allow it to dictate our lives, it really isn't living is it?

I'm early on in my survival journey. The next two years are crucial as most recurrences occur in that time span. However, I bound and determined to live and enjoy my life to the best of my ability despite the threat of this beast returning.

Here's to not just surviving but to living!

"T"

Tina and T,
I wish each of you the best in your recovery and thanks
For the kind words. I don't have a swollen lymph node, so all I have to go by is the pain and its location which is the base of the tongue. I know my doctor is qualified, but he only took a very small biopsy in one location. To my understanding BOT cancer is not always seen with ENT scopes correct? This is my biggest concern. This pain is excruciating. I'm just trying to get as much info as possible from all BOT survivors. Also, I want to wish each of you comfort, strength and healing in your journey. Each of you are an inspiration to me. I don't know my fate yet, but if I do have the big "c" I would definitely look to you guys for inspiration. This is a very special group and I can't tell you how many prayers I have said for each of you. Thanks guys.

Hi,
[quote]This pain is excruciating[/quote]You should take great comfort with this symptom as OC rarely presents like this. MANY times, stage 4 OC presents with little to no pain. When it does like in the jaw area, as soon as the pain becomes noticeable yet completely bearable, it is always picked up.

The occasional misdiagnosis is almost always with symptoms that do not present with pain, much less the level of pain you are experiencing.

So, the pain is well painful, you should mentally put your head in a place that reassures you that you don't have cancer.

best to you, don

Unfortunately if the docs haven't found anything up to now, something significant would have to happen for more tests to be ordered. Although BOT cancer per se is difficult to find, by now it would have certainly been discovered, in my opinion. Although not a fan of CT scans, after diagnosis I went back to a panoramic dental X-ray and could clearly see one of my lymph does that had cancer.

I don't know of many if any at all that had severe pain without an obvious problem that was seen on scans. I also don't know many that had any pain for that matter. I could not turn my head because of the tumor in my throat. It was not painful at all.

If you believe something and insist that others should pursue no matter what if they believe too is something that you need to come to grips with. Many of us, myself included, preferred the "prove it" method with cancer being the last thing we would accept until there was concrete proof. To assume it is cancer first and then seek out proof to support that "feeling" is almost counterproductive. Get back to life and if you feel you must, pursue it every 90 days. Something will be found eventually if it is cancer and you would have an extra 89 days of rest between visits.

I have met people that incessantly demand a doctor diagnose ALS. I will never understand why a person's mind would go to such a dark place, convince the body something is wrong and then seek out evidence to support the myth. It is a sign that you really want something bad to happen. Maybe get a dog or cat if you need the attention. Clogging up medical facilities after many doctors don't agree only takes care away from others that may need it NOW. Find a facility like a free clinic that will take your money and be able to use it. If you like I will make the diagnosis provided you will donate any fees to OCF.

I hope for the best for both of you but I would have to change the advice to go out and find a hobby or interest to keep the mind busy...except for 1-2 days a month while you keep pursuing your gut feel.

Portland, listen to the advice that has been given to you. Lucky you.
Kris did have pain, but it was ear pain. At no time did he ever have pain in his throat or in his base of tongue. He also developed slurred speech from the lymph node pressing on his hypoglossal nerve and his tongue deviated to the right from the hypoglossal nerve palsy. You do NOT have any of these symptoms.
Kris's tumour was seen on MRI scan. Nothing showed on your scan.
Please be reassured. Go and live and enjoy your life.
Tammy

Actually I do have these symptoms. My speech is affected, my tongue fights the tongue depressor from doctors which it has never done before. When I stick my tongue out is quivers out of control. Hopefully this is all nerve problems. I do had speech problems now, but I assumed at first it was nerve damage and hopefully it is. It's painful to stick it out. I'm going to neurologist and hopefully they can help. Thank you so much, I'm grateful for your response.
Prayers for you and Kris.

Was his lymph node visibly swollen? Was this the first symptom that you noticed?

After reading all this, I agree. There's definitely something seriously wrong with you

Positive thoughts and prayers

"T"