After my last radiation on 12/21/09, I've been in a waiting pattern for surgery to rebuild my jaw. Visits to ENT and plastics, with a ct scan in between, yielded a recommendation that I get a second opinion. The ENT man at Cooper Hospital does not specialize in cancer-related problems and no one was happy with his evaluation of my condition. He pretty much wrote me off saying that as long as I could talk and swallow, there was not much else to expect. The type of surgery I am looking for would be considered cosmetic and wouldn't be covered.
Yesterday, I had an appt with an ENT at Fox Chase and I was pretty much floored by what she had to say. The bottom line of it all was that I am going to be worse off after surgery than I am right now. It is likely that my speech will be much worse (I talk fairly well now) and I will have much more difficulty swallowing than now (I have no difficulty swallowing, I just can't chew anything. It has to be liquified). In addition to all this, she tells me that I have a serious jawbone infection as a result of radiation and that it will require surgery; she says there is no other treatment for this because it's not like other infections which can be treated with antibiotics. My family and I have researched info on this and came up with ONJ and/or osteoradionecrosis which articles say can be treated with antibiotics. One of the resources listed was OCF. This doctor has me pretty scared. I thought I'd be going in for surgery that would pretty much put Humpty-Dumpty back together again! Fix whatever is wrong inside my mouth; take a piece of bone from my leg and make me a new jawbone;take some skin from my wrist and make me a new chin!! I would look like me again and be able to eat and talk like a normal person.
Now all I'm hearing is one complication after another. The scar tissue from the radiation is a big factor and when they go in and start moving stuff around in my mouth they are just going to create more scar tissue; ergo the speech and swallowing complications.
She is also asking for a PETscan to determine the extent of this jawbone infection and to determine if there is any cancer lingering and how far it might have spread, specifically voicing concern of spreading to the lungs. This was also new to me. I was led to believe that they pretty much "got everything" with the chemo and radiation.
My head is reeling after this visit. I'm frightened and frustrated, but it's a beautiful day outside and I'm going to do my best to concentrate on working in my yard and enjoying the sunshine. Any encouragement would be welcome!
Pat C
