#94500 04-28-2009 12:56 PM | Joined: Apr 2009 Posts: 17 Member | OP  Member
Joined: Apr 2009 Posts: 17 | I've been lurking here for over a week while waiting for biopsy results. Just got them and it's moderate dysplasia with unclear margins. Don't know what all that really means, and I'm waiting on my family dr. to call me about finding an ENT. Any help would be appreciated. You are ALL so brave. Jackie from Dayton | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I bet you were nervous big time while you were lurking.LOL That would have been a good time to introduced yourself. WE all had to start somewhere. THanks for think we are brave. LOL I'm a big chicken but the rest are brave . CXhristine and Good1 are 2 examples of brave along with most of the others. Welcome to our home and post as soon as yu find out anything. I imagine they will treat you with rads. Maybe both depending on you ENT. My 2nd Hospital was Ohio State James Comprehensive Cancer Center.The are very good there , but I have been to WVU Hospital and 2 in Wheeling, WVa and I liked them all.Keep us informed.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2009 Posts: 17 Member | | OP Member
Joined: Apr 2009 Posts: 17 | Thank you for the reply. I have the name of an ENT to call tomorrow. I want to get in ASAP since this thing has changed over the past 3 weeks with more pain/burning/numbness. I'm having chronic bouts of diarrhea and overwhelming fatigue for the past few months also, don't know if it's related or not. Reading these posts has given me more strength to begin dealing with this and what's ahead. By the way, I'm 55 yrs. old single no children, just a wonderful little shih-tzu doggie named Sweetie. My prayers are with all of you here. Jackie Dayton | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Nice to meet you Jackie and Sweetie too. I don't even have a dog and was glad I gave him to my daughter because I have no idea who would have taken care of him. MOst of what you are experiencing, I think many here have had too. Columbus seems like only a nice drive while going to Dayton is like a trip?? I ,live near the river in a small town named Barnesville.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Can you get into OHIO State Cancer Center? They are very good . I have the phoned numbers for them.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2009 Posts: 17 Member | | OP Member
Joined: Apr 2009 Posts: 17 | I just looked up the ENT website and there is NO mention of cancer surgery. I have a niece who lives in Colombus and I think that maybe I should try to get in there. Do you know how I would go about that? This is the first day and I'm already overwhelmed. Since this is pre-cancer maybe they won't take this very seriously. Do you think I will need rads/chemo for this? I'm sure surgery will come real soon. | | | | | 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 | Dysplasia is not cancer and may never develop into cancer but it must be watched to see what it does do. I have never heard of anyone given chemo and or radiation for dysplasia.
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: Apr 2009 Posts: 17 Member | | OP Member
Joined: Apr 2009 Posts: 17 | With my family history of cancer I need to stay on top of this. My father, mother, and brother lost to it and my sister with barrett's esoph. so I don't want to waste a lot of time.. | | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Dysplasia, leukoplakia and hyperkeratosis are all biopsies I have had in the past -- Precancerous, meaning not cancer but abnormal cell changes -- Mine took 15 years before an actual SCC tumor appeared at the site -- Not to worry, but not to be ignored if it reappears. BTW, my tumor was quite obviously different from the previous lesions.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | 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 | Had about 10 years of biopsies for leukoplakia every few years before I got the bad news. My understanding also it that it does not always turn out that way.
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
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