| | Joined: Mar 2008 Posts: 2 Member | OP  Member
Joined: Mar 2008 Posts: 2 | I was diagnosed with Muco-epidermoid carcinoma. I had a maxilectomy that removed the upper right half of my jaw. 30 radiation treatments and I have been cancer free for 2 years. I have a couple of questions for those of you who have been active for a while. 1) how do you keep this obturator stable? 2) I am intrested in starting an awareness program in my area, where is the best source of info for doing this.
- Never used tobacco products, light drinker
- High Grade Muco-Epidermoid Carcinoma
- Maxillectomy to remove upper right jaw
- 30 radiation treatments
- 5 years cancer free
| | | | | Joined: Jun 2010 Posts: 87 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 87 | Welcome! I am afraid I can't really answer either of your questions but I know there are people on here who can and will! As you will see, most people on here have squamous cell carcinoma. I am one of the few with mucoepidermoid CA. I am going through radiation right now. I was encouraged to see your post and especially to see that you have been cancer free for two years!! All I keep hearing from the doctors is what an aggressive cancer this is, so it is definitely an encouragement to hear from someone who is doing well!! Thanks!
Susan
Age 51, married with four kids age 11-18, 9/1/2010, Bx: high grade mucoepidermoid CA left sublingual gland.
10/8/2010, wide excision left floor of mouth, modified radical node dissection left neck.
T1N0M0. IMRT started 11/22.
Never smoked, light social drinker
Also happen to be ICU RN
| | | | | Joined: Apr 2007 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2007 Posts: 64 | Hi: I really cannot help with Richard's questions either, but I am very happy to hear of others knwoing what I have experienced, sometimes I feel very alone in all of this. I also have had a radical neck dissection, wide excision left floor of my mouth, mucoepidermoid carcinomna of the submandibular gland. Mine was intermediate grade and I did not have radiation as they did feel it would be helpful enough to warrant it. I am very happy to say, I am a 4 1/2 year survivor! Yes, fullofquestions it is an aggressive cancer, but that does not mean you can't beat it!!
Sorry I cannot be of more to you Richard, I am sure others here will be able to help. Take care!
Adele,
mucoepidermoid carcinoma of the submandibular gland, 05/06, left neck dissection, gland and tumor removed, intermediate grade, margins negative, 9 lymph nodes negative, no rad, no chemo,
11/07 surgical biopsy of lymph node left neck, no cancer!
| | | | | 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 | Welcome to OCF, Richard. There are a couple members who have had the same type of cancer as you. There are also several who use the obturator who may be able to give you some assistance. Ive had my lower jaw removed so I do understand how hard recovery can be. I hope you are able to share some of your wisdom with others here. Congrats on being cancer free for 2 years!
As far as creating a group in your area, check with where you were treated. There are not many places where someone who has had head and neck cancer can go to meet others face to face. It would be nice to have that type of support. In my area we tried to get a group going but we were met with resistance. They even told us that there wasnt enough interest for this type of cancer. Locally, I know about 10 people who have had oral cancer. Hope you have better luck than we did and can make a group where you live.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Welcome to OCF and congratulations on being cancer free! My best to you as you work on getting a local group together.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 126 | Hi, welcome. I have been diagnosed with the mucoepidermoid carcinoma, intermediate grade, had a maxillectomy of the left side and 32 radiation treatments. I now wear the obturator. I currently still have the transitional one, but I am in the process of getting the definitive obturator made. Usually this should happen after about six months from treatment and I am past a year. In order to answer some of your questions, I have a few, did you have to have a lot of teeth removed? I know if you do not have some permanent teeth it is very difficult to have a stable obturator. My Prothodontist has stated this over and over. I had several teeth removed but I did have enough left to get a fairly stable fit. Recently there was someone who posted on here, who was still using the transitional obturator and it wasn't until she found another Prothodonist that she found out she needed to get the definitive one made. How many have you had? Six months to a year post surgery there should have been another one made, due to continued changes. I hope you can find answers, it is hard enough to adjust to the obturator. Feel free to give more info, hope we can help.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Check with our Brain Hill and his staff for advice on how to begin a group in your area.
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: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Hi, Richard -
I, too, had a maxillectomy on the upper right side, and wear an obturator. I will soon be getting my permanent obturator made -- have been wearing a temporary one for about a year now -- and would be happy to answer any questions you have, if I am able. Stability can be a problem (as "Wheels" said above) if you don't have sufficient teeth for anchoring. If you do have your upper left teeth still, you should be able to have your prosthodontist adjust the obuturator for maximum stability. Mine wiggles a tiny bit (I can make it move with my tongue), but not enough to be bothersome. Don't be shy about returning to your prosthodontist as many times as you need to in order to get this thing stable!
Feel free to ask any more questions that come up. There aren't too many of us with obturators...
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | | Joined: May 2010 Posts: 5 Member | | Member
Joined: May 2010 Posts: 5 | Hi all,
New here, I was diagnosed with mucoepidermoid carcinoma- intermediate grade, had a maxillectomy on the upper left side. Had radiation last summer. I am still wearing my interim obturator, but am seeing my prosthodontist tomorrow to begin work on my definitive one. My advice, see your prosthedontist as often as necessary to be comfortable. I drive mine crazy.
Michelle
Age 42 (diagnosed 41)
Mucoepidermoid carcinoma of minor salivary gland- Intermediate grade
Maxillectomy 4/26/10
3 molars removed
IMRT x 30 completed 7/26/10
Obturator
Most recent PET 1/7/11- clean
Non-smoker, non-drinker
Diagnosed at age 41
Intermediate Grade Mucoepidermoid Carcinoma of Minor Salivary Gland
Presented in Hard Palate
Partial Maxilectomy 4/26/10
IMRT radiation completed 7/10
Obturator
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Michelle,
You should start your own thread to introduce yourself. This way you will be found more easily.
Where are you in PA?
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | |
| Forums23 Topics18,168 Posts196,924 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
