Mandibular Sarcoma

traceyd1

I am re-posting a reply I submitted the other day. I am wondering if anyone else has experience with this diagnosis? It is less than 3% of all head and neck cancers. Here's the post:

My husband had mandibular sarcoma that was diagnosed in December 2011. Total shock to us, as he has never smoked or chewed tobacco. Little did we know that sarcomas don't discriminate! He began radiation 1/12 and had 20 treatments. Lymph nodes were clear, so he didn't need chemo. He had a segmental mandibulectomy and partial neck dissection 2/27/12. Surgery was supposed to take 12 hours, but ended up taking 18. There were problems with the blood flow to the fibular free flap due to damage from radiation. After 48 hours we had to go back to surgery for 8 hours due to loss of blood flow. Doctors were unable to re-attach blood flow, so they removed entire flap and started over four days later. They then used the other fibula and reattached veins/arteries to the other side of the neck, and we had no more complications. He had a trach for 18 days, was in ICU for 15 days, and had the trach removed the day we came home. His primary pain was in his neck, as he had neck fusion surgery several years ago. He had a feeding tube for about three months and lost about 50 pounds. His wound care was pretty intense, as both his fibulas were removed, and one of his skin grafts didn't heal properly. He had extensive physical therapy and OT for lymphodema. I am a speech therapist, so i was able to help him with some of his speech issues, but he also had a phenomenal speech therapist that works primarily with his surgeon. He really didn't have many problems. Was able to progress to a soft diet pretty easily. Definitely not a walk in the park. The first week home from the hospital was very rough. He had the sensation that he was choking, but this was because his mouth was so dry and he had dried clots of blood in the back of his throat that we had to wait to work out and suction up. He is to have de-bulking surgery in two weeks and they will also take a bit of hip to place in a gap in his jaw that didn't properly fuse. He has been back to work full time since May and will actually take our youngest on a Dad-son trip to Orlando this weekend. He will begin the process of implants in about six months. Although I would not wish this journey on my worst enemy, I feel that now that we have made it through this, we can make it through anything. Good Luck to you all.

longtermsurvivor

you both get a purple heart
for your tenacity. congrats on coming out this side of things. What are the going to debulk? Scar tissue? And how is his eating nowadays?

Best to you.

Pat