| | Joined: Sep 2010 Posts: 4 Member | OP  Member
Joined: Sep 2010 Posts: 4 | I was wondering if anyone here can shed light on this for me.. I know you're not all doctors, but I'm sure most of the patients here are far more knowledgable than most doctors about oral cancer anyway.
at 30 yrs old, I started getting tonsillitis (3-4 times in one year). After my fourth infection, I decided not to take antibiotics. it kinda went away but i started noticing as I moved my neck, I'd feel something slide across my throat. I got concerned and went to the doc. he gave me antibiotics, but i pressed him and really wanted him to look further. he prescribed a blood test and a CT scan with contrast. blood test showed EBV (at .8) and CT scan showed a thyroid nodule of "about 1cm". Radiologist recommended following up if I was having other problems.. I was, so the ENT ordered an ultrasound. Ultrasound found the nodule and said it was .5mm (1/2 cm). Then ENT sent me to a surgeon to look into it further. both ENT and surgeon scoped my mouth and throat. Surgeon said he'd like to "keep an eye on it", but didn't recommend any more testing.
Now my symptoms, I sometimes feel like my tongue is being pulled back. I also still feel something move across my throat when i move my head.(nodes?) I also feel like I swallowed sawdust, or have been yelling a lot . (allergies?)
So the big question is, do I leave it be or follow up some more. Can a CT scan miss something? I've gone to a dentist and got a velscope scan, a GP, an ENT, and a surgeon. full blood work, CT scan, and ultrasound. so I keep following up or forget it. I hate not having an answer because i feel like so many people were told it's "nothing", only to find out it's something.
30 yr old male, non-smoker, drank alot of 5-7 years (mostly wine), stopped now, | | | | | 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 | If you are worried, seeking out another ENTs opinion couldnt hurt. Did any of the doctors tell you what they thought the lump was? The only way to tell for sure if its cancer is thru a biopsy.
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: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | My fine needle biopsy came back false negative. A tissue biopsy is accurate.
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
| | | | | Joined: Sep 2010 Posts: 4 Member | | OP Member
Joined: Sep 2010 Posts: 4 | they think the lump is the thyroid nodule. the docs jammed their fingers in my neck but couldn't feel it.. i think my main question is, how accurate is a CT scan? it seems almost everyone was told "it's nothing" or had a false negative before it was discovered. | | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Ray,
A CT is a digital scan of your body. It cannot help but be 100% accurate. Reading and interpreting the scan, though, is done by a human. If you're not convinced that your concerns are being addressed, you can always seek out a second or third reading of your CT images.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | 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 | Ray, every time I had cancer it was not brushed off. Unfortunately it does happen to some people. My family doc is the one who first suggested to me that I may have cancer. There are a few bad medical professionals just like a few bad ones in any situation. I like to think of all the exceptional doctors and nurses that I have had the pleasure of being their patient.
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 | | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
