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#197865 02-16-2019 08:59 AM
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My husband is scheduled for a mandibulectomy with fibula free flap construction on 2/28. Any advice or suggestions for getting through the surgery and hospitalization?


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197866 02-16-2019 11:00 AM
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Hello Barbara
I know what you and your husband are facing. I had same surgery oct 30 2018. This is a major surgery. Be prepared to spend alot of time in the hospital. There will be alot of ups and downs. Keep your head up and know there is light at the end of the tunnel. Youll find alot of support on this site. Your not alone.
Best of luck
Mike


Mike young
Mike young #197867 02-16-2019 11:17 AM
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Thanks, Mike. It is good to hear that there is light when all I am seeing is a long,dark, tunnel. My husband has always been very healthy, and was last in the hospital in 1989 (before that it was a tonsillectomy in 1955). So. I really have very little experience with this.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197868 02-16-2019 02:44 PM
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Barbara: I posted this before but it still works.

Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits only less than 1% of the population, seek professional care from a medical center that specializes in cancer and has oral cancer specialists on staff.

2) Don’t be afraid to travel extra hours to such a center-your disease can be life threatening.

3) Follow-on care may be done at a location closer to your home that the cancer center works with.

4) Don’t wait to get help, and don’t second guess expert opinion but do get a second professional opinion if concerned.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
tlc356 #197869 02-16-2019 03:21 PM
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Thank you.

We have opinions from two cancer centers and both agree that this surgery is the way to go. Based on the size of the tumor, it is still T1, although one surgeon says there is no evidence of spread, and the other thinks it has probably spread. The recommended surgery is the same either way. The question of follow-up radiation will be decided later after all the pathology is done. I am really hoping to get any ideas of things I should do to make this very tough experience easier on my husband during his time in the hospital and recovery. I am doing my best to prepare for the long haul. I don’t know anyone else who has been through this type of surgery, and while the doctor’s offices are all willing to answer questions, every answer is a variation of “it depends”. I would hate to think there was something I could do (even little things) to make it easier for him that I didn’t know about. Even something simple like a pillow for his leg or warm socks.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197870 02-16-2019 06:26 PM
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One thing I can think of is to be prepared for RND (radical neck dissection) which is standard to insure the lymph nodes are clear. That scar can go from under the ear, down and then across the Adam's apple and then up under the other ear.
The whole thing is no fun but a life saver and time will resolve all.

The plan sounds good. Let us know how it goes.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
tlc356 #197871 02-16-2019 07:21 PM
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I really appreciate you reaching out. It helps to be in touch with someone who (unfortunately) has been through this. They told us that there would be a neck scar but didn’t give details. If that is the scar he gets, so be it. The only pictures I have been able to find are of the surgery itself which I have no desire to see.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
Barbara5524 #197872 02-17-2019 04:56 AM
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The neck scar may not be a bad one. I had the neck dissection on one side (what a dreadful name for a surgery, right?) and my ENT surgeon did such a good job you can't even see the line from it at all. If I didn't know it was there, I'm not sure *I* could find it, some days. It looks just like any other wrinkle line or crease ... very faint. One thing they did NOT tell me before that surgery, though, was that I'd lose a salivary gland as a part of the process. (Or if they did tell me, it got glossed over.) It leads to pretty bad dry mouth, which is rough enough with all the other surgeries and treatments. So if this is part of what they do for your husband, make sure they tell you if that was in the surgery. (It wasn't because it had cancer, it was just in the way, I gather.) Then you'll be better prepared to assist your husband with dry mouth issues, which I imagine would be even harder with his particular oral surgery.

((hugs)) You got this!

Last edited by KristenS; 02-17-2019 04:57 AM.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #197873 02-17-2019 06:41 AM
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Kristen: Good point. I guess I've been living with dry mouth so long now that it is down to the minor annoyance level and I forgot to mention it.

Barbara, I've sent you a message but i'll repeat it here. Smoke and drink are to be eliminated because of the risk of recurrence. If the cancer was caused by HPV, I've been told that some docs say drinks are OK.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
KristenS #197874 02-17-2019 09:33 AM
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Thanks for the heads up. The dentist mentioned offhandedly that they will be cutting a nerve so there will be some numbness on one side of his face. Plastic surgeon says he will try to reconnect it but wasn’t too optimistic. I haven’t heard anything about the salivary gland so will be sure to ask.


Husband DX’d 1/17/19 with SCC on lower left gum
Mandibulectomy 2/28/19
Recurrence 11/19
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