I thought I would wait until next week to start a discussion forum for the next steps in my treatment. Today I saw the ENT surgeon on the premise of a preliminary consultation to discuss rebuilding, reconstruction, etc. Next week, I go for my first post-radiation ctsan, then a visit with chemo/oncology, then a visit with plastic surgery. But today, it was like getting hit with a tire iron. This guy basically told me that there won't be reconstruction; there is no need. I should be grateful that I can talk, swallow, eat mushy food, breathe, etc. When I told him that he was the first doctor to tell me this, he said he's always the bad guy (meaning "they" leave the bad news to him).
I was diagnosed back in late August 2009 with squamous cell in the floor of the mouth. Had a peg and port inserted in September, had my lower teeth removed that same week, and a few weeks later started radiation, finishing December21,2009. I was told I was free of cancer and to go home and get strong for the next phase, which would be surgery. I was also told that the radiation continues to have an effect for three months after treatment so I could expect some changes. I did experience changes; subtle but nevertheless, noteworthy. Now, this guy is telling me that my waiting and anticipation has been for naught! I can't accept that this is it! I know I'm lucky to have survived but that doesn't mean I need to accept a lesser way of living if there's something that can be done. Tomorrow, I'll call my nurse coordinator to try to make some sense of this bombshell he just dropped on me but I'd sure appreciate some suggestions or comfort. Tell me he's lying!

Pat

That must have been an unexpected shock. Just remember, that was only ONE opinion.

What were the ENT's reasons that there wouldn't be any reconstruction and/or rebuilding? Who told you there would be more surgery and what sort of surgery? Have you seen a maxillofacial surgeon?

Sorry for all the questions, just trying to get all the info to see which direction would be the best way to go next.

Karen

I was basically told the same as you were. But when 3 different Drs told me the same , two of the three are close to me, I accepted it. I live and laugh, hurt and get busy to remove the pain . But I am alive. The strange person in the mirror doesn't bother me to stare at him now.

Pat,

If my husband and I heard what you did from any of his doctors, we would have gotten second and third opinions from other CCCs. Don't let this "bomb" discourage you from seeking answers from other reputable centers. We went to HUP and were very happy with the Head and Neck Cancer Department. If you want the name of my husband's surgeon, PM me. Hang in there.

Anita

Pat,

You have access to some of the best CCC's. Penn, Fox Chase, Johns Hopkins and Sloan. Pick one, two, three or four and get some other opinions.

Don't forget Jefferson in Phila as well... good luck!

In a post in a different thread, Pat said this:[quote]since I'm a charity case, I can't cross the river into Philly.[/quote]
So unless regulations allow for going out-of-state to seek second opinions, that would seem to rule out HUP, Fox Chase, Jefferson, etc.

Pat, if you are restricted to staying within New Jersey, it's worth noting that Sloan Kettering has an outpatient center in Basking Ridge that offers consultations for head and neck cancer patients. The surgeries are done at Sloan's main hospital in NYC, but perhaps you could at least seek another opinion at the NJ facility.

Was this ENT you talked to affiliated with Cooper? You had mentioned in the other thread that you might also be referred to University Hospital in Newark. That's part of the Cancer Institute of New Jersey, based in New Brunswick, which is an NCI-designated comprehensive cancer center (CCC). (Cooper is part of CINJ as well, but perhaps as the flagship hospital for the New Jersey Medical School, University has doctors with a greater level of expertise.)

Edited to add: Another thought: Since the plastic surgeon is on board with this surgery, does he/she have a recommendation for an ENT to do whatever the ENT needs to do?

Karen.. the reasons that the ENT gave me were that I can talk, I can swallow, I can eat mushy food so I should be grateful for all of this. I didn't tell him how difficult it is for me to eat that mushy food (the length of time it takes to swallow) but I don't think it would have mattered. I may be reading too much into it, but I think it was a matter of coverage - I only have NJ Medical Assistance. Prior to this visit, all of my doctors discussed reconstruction surgery as if it were the next logical phase in healing and recovery. The radiation and chemo departments collaborated in getting me this appointment and an appointment a few weeks ago with the plastic surgeon. He was totally onboard and explained what he would do in concert with ENT; they would be in the OR together. Anita.. what made Clark eligible for reconstruction? From what I'm reading, I could be susceptible to infections because of the jawbone being exposed, and who knows what else I am susceptible to. I don't really know what's going on inside my mouth. There's so much swelling or other such enlargements, that I can't see much. I can't see the floor of my mouth but the ENT pretty much told me I don't have one! (Is that possible?) My tongue is huge and I can barely move it.. bigger on one side than the other and it has a huge slit down the middle that looks like a breeding ground for food particles that might get stuck in there. He had to have seen all this! Friends and family are telling me to forget this guy! I'm trying!

Pat

Good thing that you have an appointment with the Plastic surgeon. Going by the response from your ENT, he is not the most helpful person, especially when he has contradicted what the plastic surgeon said.

Swelling from this sort of surgery can takes months to go down. According to your signature you just finished radiotherapy and chemo only a couple of months ago. So it will still be very very swollen.

It would be a good idea to take a list of questions to the next appointment with the Plastic surgeon and go through them with him/her. Include questions regarding what will be done about the exposed bone and also exactly what they have done with the tongue and floor of your mouth. They should have explained that to you in detail before they actually did the surgery.

During my reconstructions and rebuilding, the plastic surgeon played a major part in them and also the maxillofacial surgeon coordinated all the surgeries/treatments to do with my jaw (mandible) bone.

The ENT has had zero to do with me after the original surgery to remove the tumor. As I'm still receiving treatments involving my jaw the maxillofacial surgeon is now in charge of everything including checkups, regular scans etc.

Karen

Pat,, you should get a very soft brush and Biotene tooth paste and brush your tongue. It seems that when I brush, Ithen rinse good and it seems there are always small particles of food that are in the tongue. I even try to brush under it and along my gums and cheeks, Food can hide anywhere. I have those hiding places for it too. Just brush easy without any pressure. You sre are right about the slow eating time. It takes me longer to eat a marshmallow than it does most people to eat a 7 course meal. LOL

I agree Jim. For the first time in ages I had a marshmellow last night. It took forever to swallow. Anybody else would have been able to eat half the bag by the time I had one.

It sux.

Karen

Pat,

Clark had jaw reconstruction because he had numerous post radiation infections that were treated by the ENT. Eventually he ended up with osteoradionecrosis of the jaw--the jaw bone died. He has been seeing the PS and the OralMax for the last 5 months. He still has some issues with healing. Very common with radiated tissue.

I remember after the surgery to remove the cancer (11/07), the PS told us that if my husband needed additional reconstruction, he wouldn't consider it until the swelling was down.

Good luck and keep us informed on your progress.

Anita

Hello All, this is Pat's sister. I am an RN and was with her through most of her treatment. There are a lot of things that are left out here because so much happened that we couldn't possibly put it all in here but one thing about all this follow up is that the rad dr told us we would be needing to see a head & neck surgeon. Cooper does not have one so the chemo office decided to see if the ENT could do whatever had to be done. Apparently NOT. That is where the whole idea of going to Newark came from so we could see Head/Neck.
The plastic surgeon was very helpful but he really needs to see the final CT before he can have an idea what was to be done. We never get much information from the chemo office. We were rather surprised to learn bone would have to be taken from her to do a graft, we thought it would be the piece of mesh or metal we saw in the book about oral cancer.
Hopefully I will be able to make it back to NJ next week to go to the plastic surgeon again and then we can start looking more into the other hospitals some of you mentioned earlier in these posts.
Thanks everyone for the information and support.

Roseanne,

In Clark's jaw recon, they used a titanium bar--one end was attached to his jaw next to his ear, the other end attached to his chin. The fibular bone graft is positioned under the bar and anchored to it. The fibula was in 3 one-inch pieces (to follow the curve of his jaw), connected to each other by blood vessels and to the flap of skin that was removed from his calf.

There are others on this site who have had jaw recons that may have been done differently.

Anita

The image of eating a marshmallow gave me the only laugh I had today. I can not even imagine eating a marshmallow (unless we're talking a mini) Anita, I've been following Clark's progress every now and then but have to admit that I've been so depressed for the past couple weeks, I haven't followed anything. I still have lots of mouth sores and there are always changes happening in my mouth that I don't understand. I didn't know this could go on and on. The ENT guy must have known this; seems he was a bit premature in writing me off.
I do use an infant toothbrush and brush my tongue and my gums. I follow up with a waterpik which seems to catch more debris than the toothbrush. I'll look into Biotene but my mouth is very sensitive to a lot of pastes. Right now I'm using Tea tree oil with Fennel; can't use any mints.
Thanks again!
Pat