| | Joined: May 2014 Posts: 8 "OCF Canuck" Member | OP  "OCF Canuck" Member
Joined: May 2014 Posts: 8 | Hi there!
couple of months ago went under surgery to remove cancerous tumor from roof of my mouth, I have an obtrator and few side effects:
1) my mouth opening is 2 cm max (including pain) does this gets improved? it is also painfull during eating!
2) post operation biopsy all clear, what are the chances of reocurence? what can be done to replace the obtrator in the long run
THANKS
Gabs
SCC 02/13 hard palate Stag III, age63
surg 3/13
obturator
2016 Thinking of reconstruction
BE WELL!
| | | | | 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! You have found a great source for info and support.
Im sorry you are experiencing so many after effects. You have been thru alot.
Its hard to answer the questions you have asked. We are not medical professionals but fellow oral cancer survivors and their caregivers. Every case is a little different so trying to determine what the future holds for you isnt anything we could guess. As far as a recurrence goes, hopefully your medical team was able to successfully remove all the cancer with wide clean margins. Will you be having radiation?
Reduced mouth (trismus) opening could be from the surgery or lack of movement. There could be some improvement with a physical therapist or using the therabyte device. Since you didnt mention doing radiation, Im hoping your range of motion could be extended with some PT and hard work. It could be a long road to regain what you lost. Again, I dont have a medical background or know your case enough to really be certain if those things are possible. I suggest checking with your doc about it.
You might benefit from a prescription medicine called Neurontin, its to help ease your nerve pain. Nobody should have to be in pain, please check in with your doc for help. Recovery can be a very long road with ups and downs. It could take a full year for your body to completely adapt to the changes. Hopefully you will be able to bounce back quickly. Using high protein whey powder mixed into your drinks could help. Ask your doc if its ok to use. Having a diet that is higher in protein can help to speed your healing.
There are a few members who have the medical device you mentioned. Im sure others who use the same medical device will be along to share some of their experiences with you.
Best wishes with your continued recovery!
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Gabs:
Welcome to the family, but sorry you have to be here.
I didn't have the same cancer as you, but mine and I'm pretty sure most others had problems with the mouth not opening to it's original size after surgery or during treatment. In my case my docs said I had to exercise it, ie stretch it as much as I could tolerate as often as I could do it. I'm about 5 months post treatment now and have normal range of motion again.
I found a good time to exercise/stretch the mouth was while driving. Every time I got behind the wheel I just made it a part of the routine.
Hang in there, it's tough, but you will get through it.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: May 2014 Posts: 8 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: May 2014 Posts: 8 | Thank you very much ChristineB
The post operation 5 samples biopsy were completly clear
I don't get clear answers from my MD thats the reason I searched for answers here.
I hope you right and I will gain my mouth opening with time and execise.
could you tell me the name of the device that helps opening the mouth, and where is it possible to buy it
THANK AGAIN!!!!
Gabs
Gabs
SCC 02/13 hard palate Stag III, age63
surg 3/13
obturator
2016 Thinking of reconstruction
BE WELL!
| | | | | Joined: May 2014 Posts: 8 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: May 2014 Posts: 8 | Thanks Tony
Will take your advice regarding execise mouth while driving
good idea
Gabs
SCC 02/13 hard palate Stag III, age63
surg 3/13
obturator
2016 Thinking of reconstruction
BE WELL!
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Therabite and Dynasplint.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jan 2013 Posts: 23 Member | | Member
Joined: Jan 2013 Posts: 23 | Hello!
I am sorry you are also going through this. My Cancer was on my top gum area, and I also wear an Obtrator. My surgery was in Sept 12, and Radiation ended in Dec 12. Post radiation I developed severe Trismus, and was down to about 4cm opening. I have faithfully stretched my mouth for 90 minutes each day with a Dynasplint. I am now about a 12 cm opening.
I also have had one round of Botox injections at MD Anderson to help with the Trismus. The Botox injections helped, and my opening was about 17-18cm for the first few months following Botox. Just this past week, my mouth is closing again, thus I am back down to 12cm. My next Botox treatment is in July--every three months. I do feel the Botox helped. I feel the Dynasplint has helped (minimally), but I will take anything I can get.
Best Wishes. I am happy to answer any of your questions. I just had a clean PET Scan Friday! My mouth still hurts, and I still feel numbness on my right side of my face, but I count my blessings. I am still working full time, and life is about 90% normal for me. I will be happy to answer any of your questions.
SCC 9/2012 right upper right maxilla
Surgery 9/27/2012 to remove portion of right maxilla
DX-after surgery cancer cells in margin
RAD-33 TX ended 12/05/12
2/13-current-Severe Trismus and Radation Fibrosis
6/13-clear PET
6/13-Infection in radiation area of mouth, with surgery to drain infection
8/13-ended 40 HBOT treatments
11/13-Clear PET
3/14-Botox injections for severe Trismus
5/14-Clear PET/ 11/14-clear PET
Male age 53, non smoker, non drinker
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome Gabs,
Great place you found to get the straight scoop first hand from survivors of oral cancer treatment.
Hang around, search and read HERE and stay away from the wild Internet. There are great oasis of information and experience but lots of open desert between.
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: May 2014 Posts: 8 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: May 2014 Posts: 8 | Its been a while
I've been thinking of reconstructive surgury, have u heard anything about it? any recomendations?...
Gabs
SCC 02/13 hard palate Stag III, age63
surg 3/13
obturator
2016 Thinking of reconstruction
BE WELL!
| | | | | 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 | Gabs, can you please explain in more detail what you mean with thinking of reconstructive surgery. Ive had some extensive work done. I may be able to give you info depending on what you have in mind.
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 | | |
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