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Joined: Jun 2013
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This box isn't letting me go back and fix typos so I have no choice but to keep this as simple as I can. I recently seen a doctor, two in fact that are just not worried as I am. I have night sweats chills low grade fever headache shortness of breath and fatigue. All ongoing since january. sore throat and thrush all the time swolleb taste buds on back of tougue and soft palat. if i said one thing is the worst right now id say the chills. since may i notices a lymoh node on the posterior side if my neck that has stayed the same since then. andalso noticed tight neck on right front above collar bone. i staryed feeling around and felt two more in a line on the right side of my neck one abve the other just above my collar bone. I've seen a doctor about this and i did a ct. it showed mikd enlargemnet of esoohogus tissues and shotty lymph nodes. the one in my neck on the back left side is 5mm & my doc didn't seem too alarmed at all. he said it wasn't clinically significant to biopsy. i am afraid cus i have the two more onvthe right and shortness of breath chills and night sweats plus libes on the back of my tounge a burning sensation i can't get to go away. I've also done a cbc. monocytes wers high. that's about it. The doc even said i might just have to get a titer and see an infectious disease doctor. what do i do???? Titer? Go to a doc who might not look at me like I'm crazy for asking for a fine needle biopsy? Has anyone had experience with base of tounge cancer or tonsillar cancer where there was no huge tumor present or nodule present and had cancerous half cm nodes??? Or know if it possible!? I don't knkw what to do anymore


Cynthia Erlsten
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You didnt mention what type of doctor you have seen. I suggest seeking out an ENT who is experienced with oral cancer.

Some patients are diagnosed without finding the primary tumor. Unfortunately, it is possible. Bloodwork will not usually pick up oral cancer. Sorry but I have not clue what a titer is. After a quick google search, its another blood test. An ENT who treats many OC patients yearly would be probably doing other tests. Not sure why they couldnt biopsy the 5mm tissue.

My suggestion... get a qualified ENT. Best wishes!



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
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Maybe see your primary doctor also to get a complete physical, full blood work, culture tests, std's. It could be anything, and chills, fever sounds like an infection or other illness, which can cause enlarged nodes, but I'm no doctor, and there can be co-diseases, illnesses with anything too. To answer the question, the Tonsil. BOT, especially HPV related, can be painless until late stages, have no palpable lump or other obvious signs, unlike tobacco caused, and are usually not found until a lymph node is involved in late stages. I had 3 flex scopes, palpable exams and nether ENT could feel or see anything, but knew cancer was there from a FNAB in two positive lymph nodes. A direct biopsy pathology showed cancer was in the tonsil.

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
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02/19 Finally Cancer Free Took 10 yrs






Joined: Aug 2013
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Those are not common symptoms of oral cancer. If it IS cancer, it sounds like either leukemia or lymphoma.


Been misdiagnosed several times since Nov. 2012.
Sep/9/2013 - Recently diagnosed with SCC in right cervical node, with possible multiple metastatic nodes.
Trying to get into Stanford CC.
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First of all, nobody here is qualified to diagnose you. You have seen doctors and need to do what they say as they are trained in medicine. Your doctor is indicating you have an infection and need follow up. Do this first. There are a million things it could be but only a select few it can be. You have been battling this all year and are asking strangers on the Internet what it is. I don't know what type of doctors you have seen but many of us have seen a dozen or so leading up to diagnosis. Do not stop with one until you know what is wrong. I would not worry about cancer till the conclusively tell you through pathology. Going out and asking for a fine needle biopsy probably won't work either.

By the way high monocytes are classic infection, parasites or chronic inflammation...never leukemia and rarely any indication of cancer. Your doctor wants to check titers to determine what viruses your body has created antibodies for or what you have been exposed to since monocytes indicate potential infection or more important viral infection. Listen to the doctor and take care of this. Infection this long is never good. I would list things it could be but your guess is as good as mine.

Try not to worry about every possibility and get back to the doctor immediately. The body cannot battle infection indefinitely. Chills and night sweats are your body fighting fever or sever inflammatory response. This is nothing to take lightly. If your doctor isn't moving fast enough, run to another one. This is your health and you need to take action.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Whatever it is, it sounds miserable! I hope you get answers and relief soon.


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides

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