#99028 07-08-2009 02:53 PM | Joined: Jul 2009 Posts: 4 Member | OP  Member
Joined: Jul 2009 Posts: 4 | Hey guys I am a 22 year old healthy male that just had my wisdom teeth removed. During the procedure my dentist took a sample from my right posterior palate. I found out today it came back positive for low grade-mucoepidermoid carcinoma. He said it was manageable and treatable but I dont know what to think because it is a malignant cancer. Being that I just graduated from the university of maryland with a bachelor's in biology I am looking for all the information about this cancer that I can get. I meeting with a specialist july 10th. so can you anyone fill me in to what I can expect for the rest of my life. how does the surgical procedure effect me. what can I expect in the future. what if any experiences have people had with this. things like that would help me relax right now I dont know what to think but my mind is racing about so much! thanks guys | | | | | 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 | Need more info. What did the doc say he wanted to do Tx wise? Was the cancer Staged? Where will you be treated? Consider a CCC http://www.oralcancerfoundation.org/resources/cancer_centers.htm
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: Jul 2009 Posts: 4 Member | | OP Member
Joined: Jul 2009 Posts: 4 | I have been referred to Dr. Robert Ord at university hospital in baltimore and I see him in a couple days. All I know right now from the biopsy is that it is low grade. So I have alot of questions and cant wait until I see him in a couple days. So just wondering a lot of things about how things are going to be for me from now on. | | | | | 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 | Saagar, welcome to OCF. You will find lots of assistance here to help guide you thru your journey. The first couple weeks following a diagnosis can be very confusing. There will be many appointments and tests. Once all the info is compiled then an action plan can be made on how best to conquer this disease. Thats why it is very important to go to a cancer center, everyone will be working together on your case.
Please try not to panic. Worrying will not change any test outcome or make you feel better.
Best of luck with everything.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Saagar, Everyone's experience with OC is different. Here is a link to learn more about your type of cancer http://www.oralcancerfoundation.org/facts/rare/mc/index.htmthat's a good place to start. From what I've read prognosis' are usually good on low grade and not so good on high grade...but those are just numbers, it doesn't mean squat to you as who knows how your body will deal? Don't get too worried, just because you were diagnosed with cancer doesn't mean it's the end of the world. Get the absolute best care available as you may only get one chance at it. Best of luck, Be well Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | Saagar,
As you learn more and read more and talk to posters more, keep a pad handy and write down every question that pops into your head. Take this with you every visit and ask them all until you get answers.
Don't be concerned about %'s of this or that IMO.
Ask about your Tx options and what he/she recommends.
Ask about the side effects of any Tx.
Ask if there is anything recommended for you to do before your Tx starts, like dental work, fluoride trays, hearing tests, etc.
Ask about PEG's and Ports.
Ask about how many similar patients they treat a year. Ask if they can contact you about their experiences.
Don't feel that you are limited to one opinion. I got 5 and believe me I'm so glad I did. I ended up at a CCC and I firmly believe I turned out far far better than had I stopped at anytime before them.
Before you go review your questions with us. After you go, review the answers with us.
Partnering with this site will be the best non medical thing you can do for yourself.
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: Jul 2009 Posts: 4 Member | | OP Member
Joined: Jul 2009 Posts: 4 | Thanks guys. Ive been reading and researching this doctor and his publishing's just to kind of get to know him before I meet him tomorrow. Thanks David but you covered just about all the questions I can think of before I meet him and his team. Ill be back tomorrow from the appointment in Baltimore so we'll see how it goes. | | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Saagar,
Just wanted to let you know that I know very well what you are going through with the disgnosis of this rare form of cancer. I recommend getting several opinions as far as treatment and then choose whats best for you. I am actually typing from my hospital bed as I just had surgery on the 30th of June to remove my MEC. I wish you the best in this upcoming journey!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Good to see you posting Elizabeth and so soon after your surgery. I've followed your progress via your care page and am just very happy with how you are progressing....keep up the good work!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jul 2009 Posts: 4 Member | | OP Member
Joined: Jul 2009 Posts: 4 | Thanks for sharing. so the next step after meeting my doctor today is the three hour MRI on monday and then meetings with different doctors about how it looks and see what they say about treatments. he did emphasize how rare this cancer is and how he has had a special interest in salivary gland cancer. he showed me his publishings on the subject and made me copies. In his 28 years at his practice hes had a couple hundred patients with MEC. 1 out of 80 of his patients with MEC in the palate like mine has had the cancer come back later in life after the surgery. Comforting but not really because its all on my MRI now so I just have to get into that patient mindset for now I guess. Again thanks for sharing I wish you all the best | | |
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