| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I would tell you to see an ENT re the white spot on the tonsil and throat pain that has lasted for more than 2 weeks but you have already done that and more. Perhaps a new ENT?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2013 Posts: 11 Member | | OP Member
Joined: May 2013 Posts: 11 | Well I finally had 2 appointments with a larger facilty. No answers again. After filling out paper work as to why I was seeing the ENT (persistent sore throat and numbness in jaw along with sore glands on both sides from time to time) he started the visit with offering to cancel my appointment and save me some money. WHAT!!! I kept the appointment and he decided my sore throat is from acid reflux. When checking the symptoms for acid reflux I have none of them and a sore throat wasn't listed from what I read.
Just wondering if anyone with acid reflux has had a persistent sore throat?
Too bad I drove 3 hours each way for the appointments. At least I got some bargains shopping. LOL | | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Wondering:
I've had a multitude of weird symptoms like you, and been almost evicted from some of the ENT offices - guess they think I'm paranoid too. Anyway, I did see a specialist at a University 2 hours from my house last week and he turned out to be not only an ENT doctor, an Associate Professor of Surgery, Laryngology-Bronchoesophagology. I went to him because I was having swallowing problems mostly, but other problems, some of which you mentioned. The only difference, and it may not even be a consideration, is that I did have oral cancer (tonsils) with my radiation/chemo treatments ending in 2/09. However, when I go to a doctor and they find out this, if they don't "see" something suspicious, they check no further and say my problems are from late after-effects from radiation. None, except this new doctor, has checked me for having something "normal" people have. Before I go to far, Wondering, have you had any taste problems, such as sour or putrid tastes in your mouth? Or, just the sore throat issue? Let me know, and I'll tell you (send you a PM) what this new doctor found (associated with acid reflux)that may be the cause of problems I am having, and have had for almost 2 years.
julieann
Last edited by julieann; 08-04-2013 04:56 PM. Reason: "I go too far"
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: May 2013 Posts: 11 Member | | OP Member
Joined: May 2013 Posts: 11 | Just an update. Even though my primary doctor was convinced I needed to let this go, as in his words, "I have no life threatening symptoms" I did beg and was able to get another ENT appointment with a different doctor who did not suggest canceling my appointment so I could save some money. Finally, the third ENT did a scope and saw a lot going on in my throat and was able to schedule a CT with contrast that very afternoon. I have a week to wait so hopefully I hear from the doctor tomorrow, his nurse would only tell me there is inflammation in the nodes. I am optimistic but just want to be sure they are not missing something and want to get rid of whatever is causing all these symptoms.
I know the time frame for getting diagnosed is unbelievably long in many cases but I have found how long it takes just to find a doctor who will take me serious that something just isn't right. | | | | | 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 | Inflamed nodes can be a sign of an infection. Hopefully thats all this is and not OC. Wishing you all the best with finding out exactly what is going on.
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Wondering, I just want to give you a big SHOUT OUT for persisting in getting the care you need and deserve. It infuriates me to see how often people have been given pat answers......I would much prefer my doc to tell me he/she just doesn't know than to have someone try to snow me into complacence.
I hope you get good news tomorrow, we are all pulling for you!
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
| | | | | 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 | Glad you're getting lookd at and had a ct - next time ct results are usually available In 24 hours -
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Better safe than sorry!
I went to 5 different docs and if I had stopped after 3 of them I would be dead today. The 3rd BTW is a well respected MO who actually shook my hand and said "Congratulations David YOU DON'T HAVE CANCER." My wife was the one that wouldn't let that go and tricked me into seeing doc #4, an ENT, who did a FNA and BOOM Stage IV SSC.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | [quote=davidcpa]Better safe than sorry!
I went to 5 different docs and if I had stopped after 3 of them I would be dead today. The 3rd BTW is a well respected MO who actually shook my hand and said "Congratulations David YOU DON'T HAVE CANCER." My wife was the one that wouldn't let that go and tricked me into seeing doc #4, an ENT, who did a FNA and BOOM Stage IV SSC. [/quote]Thank goodness instances of missed diagnosis are infrequent but the topic does appear enough to be worrisome.
Isn't a trained ENT supposed to know what SCC looks like via a scope? How does one pass through several doctors and each misses the diagnosis?
I'm just curious as the words incompetence rarely is typed in posts here but one wonders why something not all that rare is just plain missed!!
Last edited by donfoo; 09-18-2013 08:21 AM.
Don Male, 57 - 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 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Feb 2012 Posts: 151 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2012 Posts: 151 | I have serious doubts about some ENT's. When my husband was referred to our local ENT and saw a growth on his vocal cord he decided to treat it as a fungal infection although he didn't think that was what it was. (he had previously done a paper on fungal infections and I think he was just looking to find an example to go with it.) If it looks like cancer why waste 2 weeks instead of doing a biopsy to confirm either way. Especially since his voice was at stake and each week we lost I believe cost his more.
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
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