| | Joined: Nov 2010 Posts: 3 Member | OP  Member
Joined: Nov 2010 Posts: 3 | Hi Everyone,
I've been reading on this site for about 6 weeks now. I was diagnosed with low grade mucoepidermoid on November 5, 2010. I had a small lump on the roof of my mouth in my soft palate that I noticed about a year ago. I finally asked the dentist about it in September and he referred me to an oral surgeon to take a look. The oral surgeon said that these types of cysts are likely benign and nothing to be worried about - but it should come out at some point. There was no rush so I waited another two months to fit the removal into my busy schedule. We were all shocked when I got the call a few days later that it came back as cancer. How crazy things in your life can change in a second. I had just trekked the Inca Trail to Machu Picchu in July and had just returned from skydiving in switzerland. How could I have cancer?!? I'm a 36 year old non-smoker in excellent health!
I am scheduled for surgery on January 25th at Johns Hopkins with Dr. Wayne Koch. It seems that I have it easy compared to many others on this board. MRI showed no residual cancer anywhere, so I am getting off rather easy with just surgery and then monitoring for the next several years. Of course, I'm scared about the surgery since I have no idea what to expect in terms of pain, recovery, etc. I do feel like I am in the best possible care at Hopkins with their ENT/Head Neck Surgery team. They will run pathology while I'm on the table, so I will know when I wake up that I am (hopefully) cancer free.
This board has been wonderful for information the past 6 weeks and hopefully I can contribute at some point for others with this same situation in the future. It's so hard to find MEC information since it seems to be so rare.
I wish everyone the happiest of holidays and a wonderful 2011!
Joy
Low grade mucoepidermoid carcinoma of soft palate. Diagnosed 11/10; Surgery with Dr. Wayne Koch at Johns Hopkins on 1/25/11 with clear margins obtained.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Joy, thanks for sharing that and welcome. It sounds as if you're in the best of hands. We're all pulling for you.
David 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Joy, welcome to OCF. There are several on here with the same type of cancer as you. It seems like in the past few weeks there have been a few to join OCF. Im glad there is a place to come to get important info and support about your type of cancer. You age will help you will your battle. So will your physical strength. To me it sounds like you must have a very interesting life! The doctor who is treating you has been mentioned by a few people on here. One person is a friend of mine and she had only the best things to say about this doctor. He is very competent! Many of us in the northeast US know each other personally. There are several of us who live in eastern PA and NJ. If you are in this area, maybe you could join us at the walks for oral cancer next year. Best wishes with everything you are facing! Hope you have the best Christmas ever  and a healthy 2011.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Joy, welcome to our family, even tho we hate to see so many geting this stuff we have, You are in the right forums for advice and friends. As for you " How can I have Cancer" , Cancer doesn't know any age or physical condition or really dosen't care. It just happens. I'll ask davidcpa's favorite question. Have you had a biopsy to find out if it can be HPV or maybe some other cause they can put a name to?? Ditto to what the others have said.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Joy
Welcome to OCF and the world of oral cancer - This cancer just gets younger and younger involuntary recruits for a club that no one wants to join. I loved the view of Machu Picchu from Huayna Picchu. I was there back in 1982 and was saddened to read in wikipedia how it's been developed and changed since then.
We stayed overnight so had the place to ourselves for a while.
You'll be globe trotting again before you know it.
Keep the Faith
Charm
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 2010 Posts: 7 Member | | Member
Joined: Sep 2010 Posts: 7 | Welcome Joy, Last year on December 29 I had surgery for low to intermediate grade mucoepidermoid cancer of the sublingual gland. All I can tell you is my experience. It was not a difficult surgery. I spent one night in the hospital and recovery was very quick and and without complications. I was back to work in a week. I am on check-ups every six months with my ENT Dr and so far so good. Good Luck to you. Pat
Mucoepidermoid cancer of the sublingual gland, diagnosed 9/09, surgery on 12/29. No radiation or chemo
| | | | | Joined: Nov 2010 Posts: 3 Member | | OP Member
Joined: Nov 2010 Posts: 3 | Hi Everyone,
I am now 3 weeks post surgery and can happily report that everything is great. It took two attempts at clear margins while I was under, but we got them. I ended up with a large hole in the soft palate, but was lucky that no flaps were needed. The recovery was pretty easy - minus the nasty trush infection that arrived about 5 days later. But, I'm very lucky to have caught this so early, the hole is healing nicely and life is getting back to normal.
I just wanted to thank everyone on this site. I can honestly say that this board made going into my surgery so much easier. You guys are a special bunch for sure. I look forward to staying online and hoping I can help in anyway that I can.
Joy
Low grade mucoepidermoid carcinoma of soft palate. Diagnosed 11/10; Surgery with Dr. Wayne Koch at Johns Hopkins on 1/25/11 with clear margins obtained.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So glad for the good report, Joy!
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Congrats on news we love to read.
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | That's just great, Joy.
d2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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