| | Joined: Apr 2013 Posts: 17 Member | OP  Member
Joined: Apr 2013 Posts: 17 | Thanks for the info I guess the bottom line is that I am scared and looking for absolutes of which there aren't any. Iam lucky and I thank God for my current situation.
I suppose I better get used to the fact that regardless my life has changed forever. I am glad Iam so glad I found this forum!!
DX:4/02/2013
Mild Dysplasia of Left Buccal Mucosa
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Well unfortunately there are no absolutes... the truth is if you get a definitive cancer dx.. that becomes even more murky... since with cancer there are even less absolutes. ;o) You're always walking around wondering if you will have a recurrence even if you pass certain milestones. 2yr, 3yr, 5yr...
Another truth is that you or I or anyone else can be afflicted with cancer or a heart attack or stroke etc... at any given time. I may be 5 years out from radiation and get mowed down by a bus. All any of us have is NOW. Not to say we shouldn't plan for the future but live your life now and don't put off until tomorrow what you should do today...
That said... Get a referral to an ENT. See him or her if that will ease your mind. That way if things change, or begin to get worse, or you just want it monitored by someone who KNOWS CANCER - then you are already where you should be. Then be happy you've done all you can and live your life. Just be diligent and check it monthly and see the ENT once say every few months.
best of luck... ;o)
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: Apr 2013 Posts: 17 Member | | OP Member
Joined: Apr 2013 Posts: 17 | Thank You Cheryld
I just got home from my regular Doc and he has gave me a referal to an ENT so that is good. Dont have an appt yet.
Then by luck I saw where OSU The James Cancer hospital is having a free Head and Neck screening next Friday. I called and talked to an Onoclogy Nurse and she said this would be perfect if for nothing more than peace of mind but she said this will be a full screening with scope of voice box etc.
So I made an appointment for that. At least I am going to be able to say I tried to be pro active!
DX:4/02/2013
Mild Dysplasia of Left Buccal Mucosa
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | That sounds like a perfect solution!
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: Apr 2013 Posts: 17 Member | | OP Member
Joined: Apr 2013 Posts: 17 | Well I just got back from the "Free" Head and Neck clinic at Ohio State. I was screened by one of their Head and Neck Onoclogy Docs. I was so impressed at how much time he took with me at a free screening. He even took the time to look at my Biopsy report. He went in a lot of depth explaining the Mild Dysplasia etc. He also gave his opinion as to proper treatment at this point which was to watch it closely. He also said he would take me on as a new patient and see me in 3 months for another biopsy to look for changes.
He explained that trying to surgically remove a Mild Dysplasia at this point was not worth the risk to surrounding tissue and nerves. He said that sometimes its just not that obvious where the dysplasia starts and stops.
Anyway I feel better that now it has been 4 doctors that say watch it closely and also that I now have a contact at the James Cancer Hospital!
I still don't like it in there but you have to trust someone!
DX:4/02/2013
Mild Dysplasia of Left Buccal Mucosa
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | That sounds great. Now you have some peace about it at least.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Glad to read that you have done all you can and now have the answer that makes you feel better and at peace.
I think I posted earlier that like you I am still being closely monitored for dysplasia which also gives me a degree of calmness.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | That's awesome!! He's a keeper. Best of luck!
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | That's one caring doctor! Keep well.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Apr 2013 Posts: 17 Member | | OP Member
Joined: Apr 2013 Posts: 17 | You Know He was very caring and informative and glad that I now have an experts opinion. I am glad I now have some peace of mine so I thought. Why after all this do I still have this "feeling" that something just isn't right?
Is it normal to feel this way??
Seems like I look at my mouth 25 times a day..
Ever time I swallow I wonder..
Do you ever stop wonderin and just what ever is will be??
I appreciate all your thoughts. Thanks
DX:4/02/2013
Mild Dysplasia of Left Buccal Mucosa
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