| | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Tracey -
My husband has had oral lichen planus for decades. We don't know the origin of it, because he never smoked. I do want to congratulate you on quitting smoking - that is a huge and positive first step! Since 2002, some of his lichen planus and/or leukoplakia has turned to small cancers, which luckily, were caught in time. He has had several surgeries to remove the cancers, all with clean margins. He did have a biopsy earlier this year on his lip, which showed dysplasia (abnormal cells, as Bailey mentioned). It is good that your dentist will be constantly monitoring you, but you also need to see specialists in oral cancer, like an ENT. NEVER feel "like a fool" for seeing an oncologist - YOUR health comes first and is more important than going to a specialist and finding out you are fine after all. We always recommend CCCs in here (comprehensive cancer centers, I think that stands for?) and I am sure there are a few in North Carolina. You can do a lot of reading on oral lichen planus on this site, as Colleen suggested. Just do a "search" on "lichen planus" right here on the OCF site - you will have plenty of your questions answered by those who have "been there". Keep checking in and good luck. Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Jun 2008 Posts: 14 Member | | OP Member
Joined: Jun 2008 Posts: 14 | I have found a new ENT and hopefully this one will work out! I have an apt on jul 7th and im counting everyday and cant wait. I just dont know what to look for if dysplasia turns to cancer. I have little ulcer like spots that break out every so often in my mouth. I have one now under my tounge. I agree im going to see a cancer specialist. Thanks for everything! | | | | | 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 | Be persistent and don't ever give up trying to find the answers to your questions. I got 5 opinions from cancer docs before I thought I was ready to make my decision involving my life.
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 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Tracy, you sound better. It is important to sort things out and see experts in the field of Oral problems/abnormal biopsies.
I think 'we' have found staying on top of this and seeing Drs. who really work with and see this every week/day is imperitive in keeping bad cells under control. Take care, You sound like you are looking for the correct answers for this.
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Tracey,
I have sent you a reply.
Keep upbeat, it will certainly be welcomed by your loved ones.
Cheers,
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
| | | | | Joined: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Tracey,
Thought about you all day yesterday. Praying everything went well at ENT visit.
Karen
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | Joined: Jun 2008 Posts: 14 Member | | OP Member
Joined: Jun 2008 Posts: 14 | okay my ENT had a emergency yesterday so i went today and they are going to do MRI and CT of right node on back of ear and right node swollen in throat! He said the the displaysia looked okay. But why the swollen nodes? Im not going to worry because he said that i have scaring on my right ear drum from having 4sets of tubes when i was little. The MRI and CT are set for Friday! Ill just wait to see what the results are to them. | | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Good to hear from you. Glad he is following up now closely. Keep us informed, prayers with you.
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jun 2008 Posts: 14 Member | | OP Member
Joined: Jun 2008 Posts: 14 | Thanks alot for taking the time to listen to my sorrows. I hope all goes well with you too!
Thanks,
Tracey | | |
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