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

Ive had the surgery you are talking about. It is no walk in the park! I think back to rad and chemo and all the side effects and think is was so much easier than this. I had my surgery in August and Im still recovering.

You need to go to an ENT who treats cancer patients and also a plastic surgeon who is familiar with this. I have excellent doctors who worked together to put a steel jaw in and tried to make it look ok. I dont look very good, but that will be fixed down the road. After radiation, its not easy to operate on that area. It wont heal and you can end up with huge problems.

Look for several more opinions before giving in to your second opinion. If you have an infection in your bone, that is very serious. You should be taking strong antibiotics or even IV antibiotics. Ive never heard of an infection being so bad it required extensive surgery, but Im not saying its not possible. I just dont know. For a bad infection, there is a special group of infectious disease doctors you can consult.

Hope you are able to get out in this beautiful weather and enjoy the holiday weekend. Worrying wont change anything or get you another doctor. Best of luck to you.

Thanks for your reply. I agree that the rad & chemo were a walk in the park. I have had little or no pain going thru it and little pain now. The second opinion came from Fox Chase Cancer Center. I see you are in PA. If you are in the Philly area you know about Fox Chase. They have a very good reputation; cancer is all they do as far as I know. I do intend to call and start asking some questions about this infection since our research suggests that I should be getting antibiotics. I guess I'm going to have to find a better way of coming to terms with what I'm facing. I didn't know that I would have trouble healing after radiation. I thought it was just a few months that the radiation stays in your system and then your free and clear. I won't pretend that I haven't been depressed and now this is just dragging me down. I did get outside today and worked on the yard and pool. I was able to keep my mind occupied with that unless a sad song I could relate to would come on the radio. There is still a part of me that is a fighter; a survivor and I have great friends and family ready to rally for me any time. I'm just confused, frustrated and upset. The idea of being disfigured for a long time (and maybe forever), is a very depressing prospect! How do I deal with my own vanity? I am reluctant to go out in public but I do it. Up until now, I convinced myself that this is temporary and it will only be a few months before I'm back to my old self! How do I "let go" of that notion? I sure have a lot to learn!!
Pat

Pat

Sorry that you are having to deal with this disease and its treatments. I have had to have nearly all of my lower jaw replaced and reconstructed due to osteoradionecrosis ORN. ORN can be a life threatening disease. When the blood flow through the bone is damaged from the radiotherapy it kills the bone, if there is no blood flow, the bone is dead.

In my situation they had a very good idea of how much of the bone would have to be removed from the scans and xrays but until they actually get in there and see exactly how much of the bone is dead they keep removing more of the bone until they see that there is live bone with blood in it. Then they fill it in with bone taken from a doner site. My jaw bone was replaced with bone from my hip.

It is a huge operation. The area that has been radiated can take months longer to heal than normal healthy tissue. At the same time as my jaw was done I also had to get my tongue flap reconstructed due to the damage from the radiotherapy.

If you think I can help with any questions, please send me a personal message.


Karen

Pat

I completely understand about your difficulty in dealing with what you call vanity. It is not the usual OC type of problem. This has to do with walking around every minute of every single day with little hope of ever looking normal. Its not easy at all. The stares, I just look right back at them. I would be happy to answer questions if anyone ever asked me whats wrong with my face.

I do know Fox Chase. I wasnt treated there. There are several OCF members in your area who know what other options are down there. How about John Hopkins in MD? Another OCF member has chosen that hospital. Its very important to get this moving along, look into seeing an infectious disease doc for your infection.

While its not easy, its what we do every day. You just learn to live with what has happened and hope and pray the future holds a chance to fix it. Every time I get my hopes up, I get them squashed again. Now, Im looking at probably another year before I can get reconstruction. The blood vessels must be given more time to form or I could lose my whole jaw. This takes extra long since Ive had radiation.

When you feel down, do something positive to help boost your spirits. I try not to spend much time being idle. Working outside helps keep you busy.

Best of luck with everything.

PM Jerry and Suzanne about this particular dcotor. They were both treated at Fox Chase but not for surgery as serious as you might need.

Is this ENT recommending that you have the surgery? Was she perhaps giving you the worse case scenario or did she definitly state that you need the surgery and you will be in far worse condition after you have it? Are you scheduled for the Pet scan? Did anyone mention HBO treatments?

Fox Chase is one of the premier CCC in the area. You might try HUP for a third opinion after the pet scan. I realize you were limited because of insurance issues, but Cooper, Elmer and Underwood are all in the same category for me. About the worse there is and I grew up in south Jersey. You can't get treatment for this there.

Take care,
Eileen

Pat,

Even though I was treated at Fox Chase, I really don't know anyone in the ENT department. As you can see by my signature, I had surgery only, no rads and no chemo and I was treated in the head & neck surgery dept.. Have you been to the Fox Chase website, www.fccc.edu and checked out the ENT?

You have gotten some very good advice from people that have been there and know what they are talking about.

You are on the right track now that you have been to a CCC like Fox Chase and I agree that you would be best to get at least one other opinion from another CCC. Eileen's suggestion of HUP and Christine's for JH are both great. Another possibility with you living in NJ would be Sloan Kettering in NYC.

My concern is that the delay in getting an appointment will delay your treatment for the ORN. You must impress upon the person you speak to, at whichever Center you call, that you have been told about your ORN and that you need to be seen immediately. In fact, call all 3 and see where you can get an appointment the soonest.

You may find that another institution will concur with the opinion from Fox Chase and then decide to go there. At least at that point, you should feel comfortable with any decision that you make.

I am so sorry that you have been through so much already and that you are now facing another difficult situation. Please keep us posted and if any questions come up, you can keep coming back here as often as you need to.

Thanks to everyone for the responses. I had a very good weekend with family and friends so I awoke with a better outlook this mornign. I'll savor it for as long as it lasts! Yes Eileen, if I understood correctly, the ENT was definitely recommending surgery especially for the bone infection. She never gave the infection a name. I came up with osteonecrosis and osteoradionecrosis from what I, and others, gleaned from web searches. The ENT told me that this is not an infection that can be treated with antibiotics; surgery is the only option. That is not what all the web articles say. Everyone of them indicates that I need serious antibiotics. Karen Rose..was this the case with you? I am questioning my own understanding of what I was told by ENT. I got the impression that she did not think this is the worst case scenario for me. Her opinion was that this is the most likely outcome because of scar tissue involvement. No one has mentioned HBO Treatments. I don't know what that is. I see it mentioned in the forums but that's about it. I am going to ask my sister to call the doc and ask more questions. She's an RN and has been by my side thru-out this entire ordeal. She certainly understands better than I do and knows the right questions to ask and when to challenge the diagnosis. If you have any suggestions for her, pass them on please. As for getting a third opinion, I'm not sure how to go about it. Since I'm MA, I am limited on where I'm "allowed" to go. It was Cooper who set the wheels in motion to get the approval from NJMA, so now.... do I call them direct? Yes, Eileen, most south Jersey hospitals have a lousy reputation! I thought Cooper has grown out of that in recent years but of course, now I question that too!
I'll keep you posted as I await a scheduling for the PET.
Pat

I was on antibiotics for several months due to a small area along the suture line under my chin that looked infected following the radiotherapy. It wouldn't clear up and then the plastic surgeon feared that my jaw bone had ORN. Following more tests and scans It was confirmed that there was ORN and the Oral/Maxillofacial surgeon sent me to have Hyperbaric Oxygen treatments immediately.

The HBO treatments were done before the surgery to remove and reconstruct the lower jaw bone so as to help the healing process once the surgery had been completed.

If this sort of surgery (or any other extensive surgery) has to be performed on tissue and bone that has had radiation, it makes the job so much more difficult. Also, around the mouth and jaw area there are nerves that control our mouth and facial movements etc. Keeping these nerves in good condition while removing large parts of the jaw bone can be very difficult.

It is really good that your sister will be with you and able to help with asking questions etc. As you would already know it is very difficult to process all the information.

Best wishes with all your appointments.
Karen