| Joined: Jun 2012 Posts: 3 Member | OP Member Joined: Jun 2012 Posts: 3 | Hi everyone. I am from Hong Kong. In late Jan 2012, I was diagnosed with OC and had major surgical operations to remove a lesion underneath my tongue (stage 1) and also cut away my left jaw bone (stage 4) to be replaced by a leg bone. No chemo or RT was done. I am now in the slow road to recovery. Problem now is that I can only open about 1/3 of the mouth as before. To make things worse, my teeth bite-match has also changed. A few days ago when I went to see a dentist, the x-ray photo scared me. It showed that the 2 titanium braces which were supposed to secure the leg bone in between the cut away jawbone had their lower parts snapped and broken. I did not know when it happened. I did not sense any pain or discomfort as my sensory nerves around the affected area have not regained yet. I wonder if this has happened to any members here. Are those braces supposed to be providing a life long assurance to secure the jawbone reconstruction? I am really worried of my situation.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Go see your dr. That probably has everything to do with why your jaw isn't working properly. Also with a stage 1 and 4 cancer (I'm guessing here that the 4 was the first tumor ) and the tongue secondary - that you should get. Second opinion - in my opinion you should definitely have been sent for chemo and radiation. Your nerves in the area may be damaged from the surgery -hence the lack of pain... But really you should have it looked at immediately and ask for a second opinion ![smile smile](/forums/images/graemlins/default/smile.gif) welcome and good luck!
Last edited by Cheryld; 06-24-2012 08:51 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | 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 | Welcome to OCF! Ive been thru the mandibulectomy surgery. Its not an easy one to recover from. Sorry to hear your leg bone has broken while in your jaw. This will need to be repaired. I agree with Cheryl about nerve damage probably making it so you do not feel the pain. But this also is transplanted bone not your original so you probably would not have feeling in this.
Your situation needs the attention of your doctor. They will need to somehow fix the broken bone. I did not have a piece of bone for my jaw, my doctor used a titanium plate. I had complications and the plate was removed. I do not have half of my lower jaw and am leading a good fulfilling life. I am not the average patient so dont worry about being left without a jawbone. If that would happen its not the end of the world. I dont look the same as I used to but Im alive and doing ok so thats the most important thing.
Add some high protein to your diet to help promote healing. There are many whey protein mixes on the market that can be added to milk, water or juice. Best wishes 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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hello and welcome to the OCF forums.
I completely agree with Cheryl and Christine. Your situation requires immediate attention by your surgeon. I am also in favor of a second opinion. It seems like chemo and rads would have been part of your treatment plan, but I don't know your whole story, nor am I a doctor.
I hope that you are able to find the best medical team near you. Sometimes these complications happen, although very unfortunately. Here's to hoping that it's something that can be reconstructed so that your function may be restored. First the doctors save your life, then they restore function, and then they consider cosmetics last, if that is an issue.
I wish you the best of luck. Please come back for support and to keep us posted as you are able.
Take care, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | I concur.....get medical attention! I've had the same mandiblectomy with my leg bone. I'm also a little shocked that at stage IV you had no chemo/rads after surgery. Keep us updated and best of luck!
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: Jun 2012 Posts: 3 Member | OP Member Joined: Jun 2012 Posts: 3 | Dear Cheryid, ChristineB, Kerri and ESikon and all those who had read my post. You are one whole group of great characters. To reveal more of my story. I am a survivor of NPC (cancer in the nasal) 5 years ago. I went through chemo and RT last time. My OC this time is probably due to the after effect of my RT 5 years ago. This is the reason why I cannot have another RT or chemo again. The surgeon Dr, apart from cutting off the cancerous node off my tongue, had also taken an aggressive approach to cut away a longer segment of my jawbone (cancerous cells were found in one molar cavity of which the tooth dislodged itself earlier but without blood or pain). I am now on antibiotics to kill the inflammation around the area of the dislodged bones (area which my titanium splints are fractured). Not until the inflammation has subdued, the Dr can do nothing. Meanwhile I am now on soft diet. I do not dare to force open my mouth due to the fracture. For those who are undergoing chemo and RT, I wish to tell you that there will be temporary sufferings and lost of taste and saliva. I gone through all that and the senses will all came back slowly. You just have to be patient.
BTW, what are the data below your signatures supposed to mean. Are they mandatory? Do I have to add on mine?
Chinese age 60. DX NPC T3N0M0 Jan 07. Chemo x 6 (gemcer + cisplatin) and RT x 36. Healed. Due to after effect of RT, Dx OC Jan 12. Had partial glossectomy BOT and jawbone dissection replaced by legbone. No chemo or RT this time. Metal splint of jawbone recently broken. Teeth-bite now mismatched.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | The data below just gives us an idea of what your cancer is all about - makes it easier to answer questions. It's not mandatory but helpful. As for the non rads and chemo - that now makes sense... I'm sure radiation can cause cancer but I would definitely get a second opinion as they should have pinpointed the area in your nasal cavity and likely only scatter hit the other parts. Therefore a lot of your new cancer area was probably low dose and could be radiated again. HBO treatment will also help with healing and infection.... Hugs and good luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | To our friend in Hong Kong:
Thanks for getting us up to speed with your history. I wish you a speedy recovery so that you may proceed to the next phase of treatment.
P.S. I spent a day and a half in Hong Kong on the way home from Bali. I wish I had more time to see the city. I was very impressed!
Take care, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jun 2012 Posts: 3 Member | OP Member Joined: Jun 2012 Posts: 3 | Hi everybody, The link below is how I looked like with the 2 metal splints broken at the lower part of my chin. http://img854.imageshack.us/img854/2254/xrayenhanced.jpgI am now on a 2-week antibiotics to subdue the inflammation at the dislodged area.
Chinese age 60. DX NPC T3N0M0 Jan 07. Chemo x 6 (gemcer + cisplatin) and RT x 36. Healed. Due to after effect of RT, Dx OC Jan 12. Had partial glossectomy BOT and jawbone dissection replaced by legbone. No chemo or RT this time. Metal splint of jawbone recently broken. Teeth-bite now mismatched.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there! Wow - okay - can I suggest another dr? Looking at your xray the item they placed into your jaw is broken. All the antibiotics in the world will not resolve this problem. Only surgery to repair it will. The antibiotic will clear up inflammation and infection in the area to help you heal and get you ready for surgery but that will just temporarily get rid of the symptoms - your jaw cannot stay that way. If your dr. Isn't doing anything about it go to another dr. ASAP! Leaving it like that can cause long term tissue damage, chronic inflammation etc... hugs and good luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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