| Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2013 Posts: 114 | 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.
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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! ChristineSCC 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 | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2013 Posts: 114 | 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. | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | 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 NED Since
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | 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... 
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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,294 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,294 Likes: 1 | 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
| | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2013 Posts: 114 | 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. | | | | Joined: Jul 2013 Posts: 10 Member | Member Joined: Jul 2013 Posts: 10 | 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. | | | | Joined: Jul 2013 Posts: 114 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2013 Posts: 114 | 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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