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#194015 03-10-2017 10:12 PM
Joined: Nov 2009
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Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
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Hi everyone. I'm investigating appearance issues for my little group in New Zealand.

If there is some disfigurement which could be fixed by further plastic surgery, would your insurers fund it? Does your follow up care/survivorship care provide it or suggest it?

It seems that we have a shortfall here. Everyone goes all out to eliminate the cancer but further procedures to ensure an improved appearance and better function are not a priority.

After breast cancer, a reconstruction is provided. Is any similar reconstruction offered to oral cancer patients or is it just too difficult to do. I'm not really inquiring for myself but curiously, I saw a new surgeon recently for Botox. (I drool!) He mentioned as an aside that I could have some sort of "wedge" procedure on my limp lower lip to stop it receding so much on one side. That was never mentioned by my regular follow-up team.

Can anyone shed any light on this issue?


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Jun 2007
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When I went thru my third round of OC in 2009 I had complications with the first mandibulectomy. My body rejected the titanium plate causing the transplanted skin to turn black and die. The titanium plate was removed and the mandibulectomy was redone 3 weeks after the first one. This left me permanently disfigured. Alpaca, I kinda think you may have seen my photos but Im not completely sure. One year later I was finally eligible to have reconstruction surgery to help fix the left side of my face and neck. This was 100% covered by my insurance. I even had some other surgery covered 100% as it was a direct result of the failed mandibulectomy. I'll PM you with those details. I hope this helps you.


Christine
SCC 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 smile
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Oh, no, I deleted my post! Thank you Christine. We are helping review the standards for head and neck cancer treatment in our local area in New Zealand. Wondering about plastic surgery/reconstruction and also dental prosthetics etc. We have a lovely little site in New Zealand now but I always refer to OCF when out of my depth because of the expertise and volume of people.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
I know we do have members from NZ. I hoped you would get some replies. I gave it a couple days and saw you still hadnt gotten any feedback so I thought it cant hurt to give you some input from the US. Here our medical systems work in mysterious ways!!! What I explained here could turn out completely different if I had less insurance or far worse for the patient with no insurance. My input is in no way anything to do with the US politics (please no political feedback from anyone). I had excellent insurance due to the job I had. I had a union job with a major telcom company for many years so had top notch medical/dental insurance.


Christine
SCC 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 smile
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Hi Alpaca,

I saw your post a few days ago, which Christine pretty much covered for the U.S. aspect, and glad to see your involvement and information sharing in New Zealand.

I have been offered the lower lip "Wedge" surgery you mentioned, which condition you speak of was a result of my jaw nerve being cut from the segmental mandibulectomy I had last September, causing similar left lower lip numbness and paralysis. During this surgery, my ENT could also debulk my neck, which I inquired about, where the calf skin paddle is from surgery. I was supposed to have the wedge surgery after the holidays, but with my leg graft delayed in healing, and scheduled regraft surgery, in addition too, having neck fibrosis, lymphdemia, and being vessel depleted in my left neck as a result of numerous other neck dissections and radiation, 5x each lol, I figured I'll reconsider after the leg graft in April, which is being done by the plastic surgeon,

My Insurance, now medicare and a medicare supplemental plan, would cover this surgery. I did have what is considered reconstructive surgery during the mandibulectomy; a fibular free flap, which is pretty much standard now with late stage ORN surgery, which was covered by insurance also. There are a few other treatment/surgery related defects I haven't inquired about, and not sure if insurance would pay, being it's more aesthetic, but my concern is just wanting to avoid another surgery, but I would guess such may be covered by insurance if it's medically necessary.

Good luck





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







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