| 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 | Karen thats excellent news!!!! Im so happy for you You must be on cloud 9!!!! It will get even better once the swelling is gone and the stitches are out. Im so glad that your surgery was so successful. Pat, your doc was just plain rude. How ignorant to say something like that to you!!! Maybe go to another plastic surgeon. Anita likes the one her husband sees, maybe check him out. Dont let that guy bother you, I think you look beautiful He should take a look at what happened to me before he says something so mean to you. 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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Thanks everyone for your good wishes!!
As expected, there's still some swelling. Besides the swelling and the bandages being tight around my neck and throat everything is going well. I've got another appointment at the doctors next week for the stitches etc to be checked out.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | I had the stitches removed on Tuesday from my chin and neck area. Considering what my lower face and skin has been through, the Doctor's assistant who removed the stitches, was very happy with the healing. I'll continue to lightly dress the area with Micropore tape for a couple more weeks.
My jowls are still a little swollen and puffy. From previous experiences, swelling can take months to go down. My lower face is no longer lopsided and crooked. The fat injected back into the outlining area of the flap has definitely loosened my skin, the skin doesn't pull as much as it did before surgery. I'm not waking throughout the night as often as I did. It was incredinly tight and caused a lot of discomfort.
The bruising on my stomach has gone, there's only a faint incision mark under my belly button.
Depending on how everything looks once the swelling goes down, the Doctor mentioned I might require a little more liposuction on my jowls. Due to plates and screws around my mandible and obvious high risk of infection, she didn't want to over do it. My next consultation is the week before Christmas.
Knowing what I know now, liposuction and fat transfer alone wouldn't of produced a satisfactory outcome. The skin graft was necessary to help create a natural shape and move the uneven skin into position.
According to some Plastic Surgeons I met with earlier, the procedures I've had were not options available to me, and in some cases were never even mentioned. I clearly remember the words from one overrated, over priced Plastic surgeon who specialized in facial cosmetic and resconstructive surgery. After flicking through my file for 3 minutes and looking at my face for 10 seconds, he said, "There's nothing more we can do for you Karen." I was told he was one of 'the best'. I was devastated by his prognosis.
No matter how much we like and trust our doctors, it's imperative we seek several opinions before we proceed with treatments, or believe we don't have other options to improve our situation.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | 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 | Karen, I am so happy for you Its been 2 weeks so now you can really tell what the end product will look like. You are so right about doctors. Not all are willing to go the extra mile and even try to help. Plastic surgeons dont want to have someone who doesnt look perfect as their patient. It might somehow reflect badly upon them. Im glad you have found a good doctor who was able to help you. Best of luck with your continued healing. 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 | Sounds very positive so BE HAPPY. lol
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | It is so great to hear that you are doing so well Karen It�s a shame that sometimes it can boil down to pure good luck in getting that empathetic and compassionate surgeon who is more 1/2 glass full rather than 1/2 empty. I have been seen by a few plastic surgeons at my routine checks but rarely the one that did my original operation...not even during the first 2 weeks in the hospital. I like Christine's thoughts on that subject and the rest will be in a PM. Best of luck with your next consultation but I hope you continue with the updates before then. I am sure it must give a lot of hope to people in a similar situation to yours. May you continue to heal quickly and be pleased with the results. Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | My thoughts exactly Christine. Thanks Gabriele looking forward to your PM.
After my first major surgery, everything was going very well. The result was first class and the team was 'terrific'. After radiotherapy and chemo, when things began to go belly up, they started to duck for cover. Their attitudes changed dramatically.
I've since taken my concerns to the CEO of the hospital, and also to the Chairman of the Board of Directors of the appropriate hospital system (who I used to work with). I hoped by taking the matter further and sharing my experience with them, they would work to improve their systems, and avoid others having to deal with some of the difficulties I was continually faced with.
The result has been positive. I received correspondence earlier this month from the CEO of the Health services system which covers several hospitals in the western health system. (5 or 6 hospitals both public and private) They have now created and appointed Nurse Liaison Officer for patients with ongoing Plastic and reconstructive surgery issues like me. It's a great start. I'll keep lobbying, there's LOTS of work that needs to be done for oral cancer patients.
Once my facial appearance is sorted, my next 'mission' is to ask the Plastic Surgeon if there is any way she's able to improve the tongue flap mobility I have. Hmmm.....I sure hope so.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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