| | 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 |
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Great news! Put this scare behind you and get on with your life! & thanks for the prayers... 
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: Apr 2013 Posts: 92 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | Great news!! So happy to hear, although I enjoy having people to talk with who relate I would like it even more if no one ever needed to join our group again.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | Joined: Aug 2013 Posts: 9 Member | | Member
Joined: Aug 2013 Posts: 9 | I have to say the anxiety is still with me even though I was not diagnosed with SCC. I have an apt with an ENT surgeon this evening to see where to go with the diagnosis of dysplasia. Iwish I had thought to ask if the dysplasia is mild moderate or severe.......guess Ill find out tonight.
Anybody ahve any suggestions as far as quesitons to ask the ENT doc tonight?
life is good
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | If you do a search on the main pages for dysplasia or any other subject you see that interests you and it might give you some ideas for questions to ask the doctor. What I've done in the past is type out my questions double spaced and have two copies, one for the doctor and one for you. If someone can go with you, that helps to remember what was said and you can check back later with each other to make sure you understood everything. I like your signature line "Life is Good" and there is always something you can do to make it even better! Let us know what happens with the ENT this evening.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Aug 2013 Posts: 9 Member | | Member
Joined: Aug 2013 Posts: 9 | Anne Marie,
Thanks. My wife and I already typed up a bunch of questions for the doc. Mostly about chances of dysplasia coming back as cancer after removal and that sort of thing. I called my OS office and the found out the dysplasia is "mild to moderate"........any thoughts from you wonderful people on what that means?
And yes....life is good.....no matter what it gives me I'm in it for the long haul.
Last edited by whacko; 09-03-2013 08:03 AM.
life is good
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | See my signature below: My husband's initial diagnosis of a leukoplakia (white patch) on his mobile tongue was moderate dysplasia. As Brian Hill told me when I first asked here about dysplasia seven years ago (boldface added by me):
[quote=Brian Hill on 5-9-06]
Dysplasia are those cells which are no longer normal, but they are not really malignant yet ... an in-between state, so to speak. Dysplasias also do not always go completely over to the dark side, but they are a step in that direction ... and having them removed or watched very regularly is prudent. Dysplastic leukoplakias can often return after surgical removal, many times done with a laser, sometimes via a blade excision. Keep an eye on things even after the removal from now until forever.[/quote]
Most dysplasias do NOT turn malignant; my husband was one of the unlucky ones. He was referred to a local ENT for an excisional biopsy of the whole area because the pathology report of the oral surgeon's biopsy of a tiny area raised some concerns even though no cancer cells were found.
By the time of the excisional biopsy (a month after the oral surgeon's biopsy), his leukoplakia had indeed become malignant -- but it was caught at the very earliest stage possible, it was removed with clear margins, and it required no further treatment. He is regularly checked by his dentist and has been referred a time or two to the oral surgeon; fortunately, those referrals didn't result in discovering anything serious (or even vaguely concerning). He also has gotten regular checks by a cancer specialist ENT at Johns Hopkins, whom he saw as soon as cancer was officially diagnosed and who was the one who said no further treatment was necessary.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Aug 2013 Posts: 9 Member | | Member
Joined: Aug 2013 Posts: 9 | Leslie,
Thanks for the info. Last week when the OS said it was not cancer and dysplasia I felt relieved but after reading and researching I am not so convinced I'm out of the woods. I am hoping the ENT spec I see tonight does not say "we'll monitor it" and wants to remove it. I've seen stats that mild to moderate dysplasia have anywhere from 3%-12% chance of "turnign to the dark side" as you put it. I don't like those chances.....my question is what does "monitoring" do? I go back every 3 months to have them eventually say "well now you have SCC guess we should have removed it when it was mild dysplasia"? Am I thinking correctly here?
life is good
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | With the odds you mentioned, your chances of the dysplasia developing into cancer are very slim. You are very very lucky!!!! I understand your concern but please try to focus on the stats of 88-97% of all dysplasia will not turn cancerous. Those are some pretty great odds!!! Going back to get checked out every 3 or 6 months is substantially much easier than what an oral cancer patient goes thru.
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: Aug 2013 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2013 Posts: 54 | Wacko,
Not trying to be the bearer of bad news here.....but my OS and I "watched" my leukoplakia for a year. During that time I had 2 clear biopsies. I was the. Released from "watching" it. 6 months later my spot was the size of a Lima bean and somewhat painful. I made an appointment with the OS to check it again. 3 rd biopsy showed invasive SCC that had gotten into my tongue muscle. Stage 2 at diagnosis. I am scheduled for an 8 hour surgery next week to remove it, reconstruct my tongue, and check my neck for spread into my nodes. YES ..... The odds are in your favor.. ..... But WATCH THAT SPOT LIKE A HAWK! Mine went to the dark side QUICKLY and aggressively. I'm just glad I was still checking it frequently.
48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
| | |
| Forums23 Topics18,306 Posts197,298 Members13,504 | | Most Online7,516
Mar 21st, 2026 | | |
|
