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"