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Posts: 8
Joined: Jan 2009

Hi, I'm a new member, 52 year old man from Oklahoma. I recently received a diagnosis of Leiomysarcoma, which is rare enough in and of itself. To make matters worse, rather than the arm or leg where it would normally be found, mine is on my neck, just below the back of my jawbone.

So far, there has been no treatment. It was found sort of by accident. I had a bump on my neck, and, since I develop cysts on my back, I thought that was what it was. Both my wife and my father encouraged me to have it taken out, so I did. The Internist thought it was a Lipoma, but had it biopsied, just to be sure. It came back as Leiomysarcoma. Fortunately, stage one.

I have an appointment with a surgeon on Monday, Feb 9th. He is a professor at the University of Oklahoma Medical school, specializing in cancers of the head and neck.

Posts: 8
Joined: Jan 2009

well, I'm set for surgery next Thursday, Feb 19. They expect 8 hours, because the tumor site is resting on the salivary gland, and is very close to the nerves which control the left side of my jaw and my left shoulder. They're going to try to do this without doing anything crippling. I thank them for that.

hollyberry's picture
Posts: 176
Joined: Nov 2008

Dear Rich,
I hope that all goes well with your surgery and you are free from this beast as soon as they take out that tumor.
I know how scary this can be; I've been battling melanoma for 15 months and had 4 surgeries and 2 chemos already, and it sure does take it's toll. I hope and pray that you can get through this nightmare as quickly and gracefully as possible.
I will keep you in my prayers.

Posts: 3
Joined: Feb 2009

I to have this really rare form of cancer....I have not had treatment as of yet will have surgery on the 23rd of March in SF, I am scared to say the least, I do not know what stage I am at, I will find out on the 9th of April, please keep us all in formed on your progress. I like what Hollyberry said, gracefully and quickly..good choice of words.I am going to remember that in my fight to beat this.
keep in touch

Posts: 8
Joined: Jan 2009

Seems I'm to have radiation. They were waiting for the surgical incision to heal, and then, due to the possibility of osteonecrosis (bone death) in my lower jaw, they sent me to a dentist. Now, I find out, my teeth won't stand up to it, so Tuesday I lose all my teeth. If they have to be pulled, after the radiation, there's a possibility I might lose my lower jaw. Got fitted for dentures Friday.

There's only a narrow time window to start the radiation, so that'll start in two weeks. five times a week for seven weeks. Now, I'm not sure how my boss is going to react to that amount of time every day off work. Depends on what time of the day. He's told me to take whatever time I need, but it would add insult to injury to lose my job over all this.

My wife and I have a lake lot, and it's so good to get down there, away from it all, and just relax. Hope you have something like that. A time to just relax and forget all about it for a couple days.

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