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My husband felt this lump on his jaw last summer.

He mentioned it to me but we never took it serious. He said it didnt hurt and was more of an annoyance.

It started out about the size of a pea.

By Christmas 2003, it had begun to grow and you could actually see it protruding through the skin. It grew to the size of a marble.

We called his primary Doc who referred him to a Surgeon. The first thing he did was schedule a chest x-ray and a CT scan with contrast. They both showed nothing.

The Doc decided it was a [I]subaceous[/I] cyst (sp) and suggested my husband undergo surgery to have it removed. So in February '04, under local anesthesic, the Doc cut his face open and attempted to remove it.

During the surgery, the Doc said (out loud while my husband was listening) "Lets sew him up, theres nothing I can do for him" Which, of course, scared the crap out of him.

He met with us after and explained that it wasnt a cyst but whatever it was was embedded in facial nerves and he felt uncomfortable trying to remove it. He sewed him up.

I asked him specifically if he took a biopsy and he said "No, the facial nerves were in the way."

Later, in a follow up visit, the Doc said he thought it was a Parotid Tumor and suggested an MRI with contrast. After that came back negative, the Doc suggested another CT Scan. It too, came back negative. That was the last time we heard from the Doc. March 9th '04.

Because we were scared that whatever the thing was, it was growing, we contacted the primary doc again. He referred us to an ENT.

The ENT did a needle aspiration biopsy, which came back as a [I]Lipoma[/I] (sp) But this Doc didnt trust the first Radiologists review of the CT and MRI scans so he took the films to another hospital to have them reviewed.

Thats when they noticed the lump had grown and wasnt round like a Lipoma usually is. It was flat and spreading.

They called me ( Husband was still at work ) on Friday at 4 pm. The PA was so anxious she wanted me to make decisions for my husband regarding a referral. I could hear the intensity in her voice. I knew then this wasnt something we could just let go of.

So, when my husband got home, I broke the news to him.

I explained that the PA, Doc and Radiologists agree it is a liposarcoma and its spreading into his face. They said they had to have an answer by today ( Monday ) so they could set up a referral at another hospital and gave him a choice of 3 University Hospitals.

After a terrifying weekend of "what to do's", he chose to go to UVA in Charlottesville, Virginia. Its about a 4 hour drive for us but it will be worth it.

He has recently found two more pea shaped lumps in his abdomen and in his breast bone area. The PA told me to make sure he mentions it to the New Doc.

The PA said that the first day we are there, he will consult with the Doc and make a game plan. Hopefully, the next day, he will be scheduled for surgery to remove the lump and hopefully the other, newly found lumps. The figure he will be in the hospital for at least 4 days.

As for radiation or chemo, no one has mentioned it to us yet.

The internet is great but I agree that there isnt a lot of info availible that can be read in layman's terms. Also, personal experiences speak louder than a piece of paper.

My husband has a pretty good insurance plan but it wont pay for everything. Because were leaving the state, I had to make plans to get his visit pre-approved. Did that this morning and now we have to wait 3 - 5 days.

I have tried to express the urgency in this matter but everything is so political. :-(

Now, we wait until the red tape is cleared.

I dont know how we are going to do it. Financially, we are strained, primarily because of the quack Doc who did nothing, then disappeared.

We were sitting at the dinner table tonight after the kids went to bed, sorting through our bills to see which ones we wont pay this month to have the money to make the trip (s) and pay for a motel. I told him I would sleep in the car or in the waiting room at the hospital if they would let me.

Its an awful, helpless feeling and I can only imagine how he feels.

Were already in debt $10,000 from the first surgery. Hes the breadwinner and he told me this evening that if it wasnt for me and the kids, he wouldnt waste his time having this surgery. He is clearly depressed and Im trying to maintain some cheerfulness but its getting harder each day.

Thanks again for your words of experience. If anyone else has anything to add, please do. I need all the suggestions I can get.

Jen





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