| | Joined: Jun 2012 Posts: 3 Member | OP  Member
Joined: Jun 2012 Posts: 3 | I am new to this group and am a five year out survivor of stage 4 tongue cancer. I have a whitish spot on my gum that has been biopsied and shows "mild epithelial dysplasia. Is anyone familiar with this? Any alternative therapies? anyone with any experience?
Joe | | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Joe I was out and just read your noon PM to me. Glad you figured out how to post. This really sucks. Its so scary to think that you might even have a possibility of joining our recurrence club. As a member of that club, I can assure you we do not want any new members. A quick search on the OCF forum turned up this thread on mild epithelial dysplasia med thead It was back in 2010 and the poster never posted again so we hope that means it never turned into cancer for her father A more recent thread this year med 2012 and this one med also 2012 Both of them also have a poster who only posted 3 times and never posted again so that usually means it did not turn into cancer either. Others may chime in. Also it is not necessary to post the same question in different forums. In fact it makes it much harder for people to help you as some post in on, others in a different one. I'm only answering this one Welcome to OCF Others with more experience in this will probably chime in but from reading these 3 threads, your odds sound good. Charm
Last edited by Charm2017; 06-15-2012 12:45 PM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | This is not necessarily cancer although it may lead to cancer so it must be watched but I'm sure you have already been told that. I'm not aware of anything that can be done to prevent it from going to the "dark side" but it may resolve itself and never become cancer so again watch it closely.
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 2012 Posts: 3 Member | | OP Member
Joined: Jun 2012 Posts: 3 |
thanks for your info. I will visit my ent soon. I am just wondering if I will need to have it removed.
Joe
| | | | | 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 | Its good news that is is dysplasia, not cancerous at this time. Some OC survivors will opt to get something like this removed instead of playing the watching/waiting game. Depending on what type of treatment you had with your original cancer, it could impede your healing capabilities. Most of us who have had radiation dont heal as easily as patients who got thru with just surgery.
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 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi and welcome to OCF Joe, If you look at my signature you will see mention of Epithelial Dysplasia. Like you I am over 5 years out. At this stage the surgeon is just keeping an eye on me and I suspect another biopsy at my next visit. Below is the the end note from my January laser biopsy done in 2 areas. Would prefer cut and stitch next time  Gabriele CONCLUSION
1. Right anterior tongue :
HYPERKERATOSIS WITH FOCALLY MILD EPITHELIAL DYSPLASIA.
2. Right anterior pillar:
HYPERKERATOSIS WITH MILD TO MODERATE EPITHELIAL DYSPLASIA.
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 | I would have it removed for peace of mind. And HI!!!!
Last edited by Cheryld; 06-15-2012 08:21 PM.
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: Dec 2010 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 62 | My mouth has quite alot of mild dysplasia apparently. After my initial tumor was removed I was told that I wasn't (fortunately)a candidate for either radiation or chemo as neither worked on dysplasia. My surgeon only removes dysplasia when it moves from moderate to severe dysplasia. Mild dysplasia can often resolve itself. However, if your dysplasia is in a small localized spot I think removal would give you great peace of mind.
Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
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