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#168938 08-07-2013 02:20 PM
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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.


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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
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
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4/4/08 recur L chk Stag I
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7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
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OC 3x in 3 years
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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.

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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"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
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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... smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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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.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
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03/15 Sequestromy Buccal Flap ORN
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02/19 Finally Cancer Free Took 10 yrs






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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


Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
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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.

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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.

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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.

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