| | Joined: Nov 2010 Posts: 8 "OCF Canuck" Member | OP  "OCF Canuck" Member
Joined: Nov 2010 Posts: 8 | Hello Everyone,
I am wondering whether someone has had second reconstructive surgery of the jawbone. I had my first reconstructive surgery of the left mandible in April this year.The flap was taken from the scapula. However, last month it was found out that the cancer is back in the area of the connection between the implanted bone from scapula and the bone close to the mouth. My surgeon has told that it is possible to have a new reconstructive surgery and flap can be taken this time from the fibula.However, he is reluctant to do because that will be the third surgery (I had a neck surgery in 2008) and because he is convinced that the cancer is very aggressive and probably incurable. He proposed chemotherapy instead. I am going to have second opinion with another surgeon soon. Any thought and suggestions will be greatly appreciated.
Thanks
Dob
Metastatic Small Cell Carcinoma-first diagnosed 2008, treatment included radical neck surgery, radiation and chemotherapy
April 2010 -reconstructive surgery of left mandible with flap from scapula; radiation
Oct. 2010- tumour in area of the connection between the flap and the bone
Stage IV
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Dob,
You didn't say anything about a Cancer Center are you going to one? I don't know if you have any in Toronto, but I did live outside of Buffalo, NY that's where Roswell Cancer Center is located. I would be going to a Cancer Center for another opinion.
Take care,
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Nov 2010 Posts: 8 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Nov 2010 Posts: 8 | Thanks, Connie.
I am going to Princess Margaret Hospital in Toronto.
Dob
Metastatic Small Cell Carcinoma-first diagnosed 2008, treatment included radical neck surgery, radiation and chemotherapy
April 2010 -reconstructive surgery of left mandible with flap from scapula; radiation
Oct. 2010- tumour in area of the connection between the flap and the bone
Stage IV
| | | | | 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 | I would agree with the cancer center idea. I dont know what is available to you in Canada. Im not sure if you have had radiation or just the surgeries. But chemo will not cure this kind of cancer.
Im not trying to scare you but it is very very important that you do not put off getting that second opinion. Do not procrastinate!!! If my doc suggested something like this I would be calling every other top rated oral cancer specialist and insisting on an appointment that week. Its best not to go to one of your current doctors associates, go to a different cancer facility and seek out someone experienced with oral cancers.
Ive had a mandibulectomy and know how hard it is. My first free flap failed and it had to be redone. Ive also gone thru 2 recurrances. Ive had a rough time of it, so I do understand exactly where you are coming from. 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: 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 | Dob,
small cell...is that lung cancer? I have never heard of oral cancer describe as small cell but I did know a neighbor who had small cell lung cancer.
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: Nov 2010 Posts: 8 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Nov 2010 Posts: 8 | Hi David,
Small cell carcinoma can be found in many places of our bodies. Mine is in the mouth. It is difficult for detection because it doesn't develop tumours like most of the other types of cancers.
Metastatic Small Cell Carcinoma-first diagnosed 2008, treatment included radical neck surgery, radiation and chemotherapy
April 2010 -reconstructive surgery of left mandible with flap from scapula; radiation
Oct. 2010- tumour in area of the connection between the flap and the bone
Stage IV
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Dob,
If I were in your shoes I would go across the bridge to Buffalo to Roswell Cancer Center for another opinion.
I'm sure they have a website on the internet.
I didn't go through what most have on the forum, but if I didn't go to Moffitt Cancer Center in Tampa I would have been in a heap of hurt.
The ENT Surgeon here in Fort Myers told me my bottom teeth would be pulled, a peg tube put in, radiation and chemo. Going to Moffitt to a top surgeon he told me, your tumor is growing out and not in that's a good sign, you'll have surgery, a few lymph nodes removed, the report will go before the tumor board and they will decide if I needed Radiation or Chemo.
See where the difference is between a Cancer Center and and and let me put this nicely an ENT Surgeon. I highly recommend a Cancer Center.
Keep us posted...Take care,
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Nov 2010 Posts: 8 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Nov 2010 Posts: 8 |
Metastatic Small Cell Carcinoma-first diagnosed 2008, treatment included radical neck surgery, radiation and chemotherapy
April 2010 -reconstructive surgery of left mandible with flap from scapula; radiation
Oct. 2010- tumour in area of the connection between the flap and the bone
Stage IV
| | | | | Joined: Nov 2010 Posts: 8 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Nov 2010 Posts: 8 | Hi Christine,
I have two recurrannces too. There are cancer centers in Canada, but there are many patients and one has to wait a lot.
I am wondering how is in U.S. Is it possible to get an appointment with top specialist within a week?
Metastatic Small Cell Carcinoma-first diagnosed 2008, treatment included radical neck surgery, radiation and chemotherapy
April 2010 -reconstructive surgery of left mandible with flap from scapula; radiation
Oct. 2010- tumour in area of the connection between the flap and the bone
Stage IV
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Dob,
It took me 2 weeks to see a surgeon at Moffitt my thinking, it was season here in FL. Seeing you have winter you might get in soon seeing they're all down here.
Give Roswell a call it can't hurt.
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
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