The cancer returned in january, they thought they got it all, but now they have found it in my jaw (just diagnosed last thursday). they tell me i need to have a part of my lower jaw replaced. i don't have to tell anyone here how scared i am. i will be talking to my surgeon and getting a second opinion this week. can anyone tell me what i can expect? My surgeon is at johns hopkins and will probably be going to GBMC in baltimore for my second opinion. any advice?

thanks so much
Gina

Gina, sorry you have to go thru this. Seems like lately there are several OCF members who have had this procedure, including me. I had this done in August and Im still recovering. I may have had a difficult time, so please dont worry it will take you so long to bounce back. I will post more later about what to expect. As in any OC, if you can eat right now is a good time to eat EVERYTHING!!!!!!

Gotta run to HBO.

Ask what they will use to rebuild your jaw. Will it be made of steel or from part of your leg. Ask about if a neck dissection will be done. If they will be using a skin graft and where they are taking it from.

Can you please add a signature. Without knowing your history, its difficult to give you info. Have you had radiation?

Gina,
I had a complete lower jaw replacement several years ago. They used a bone from my leg for a replacement. I am just fine! The recovery from the surgery was about six weeks and then I began to eat soft foods and gradually added different foods. Now, I eat anything and have no problems. Don't be scared it isn't the end of the earth and you will be fine. Best of Luck

Hacklene

Hopkins has the top Head & Neck dept in the country and is rated 2nd in cancer care...hard to get better care anywhere really. 2nd opinions are prudent but I'd go with John Hopkins if it were me.

I had this surgery done myself and there can be issues with it, which is why you want the best possible team involved in getting the job done. Don't let fear get in the way of getting this taken care of...read the daily quotes dealing with fear in the Coping section for inspiration if you need.

Best Wishes,

Eric

Gina,

Good luck with your appointments in getting a second opinion this week.


Hacklene,
It is always good to read about successful outcomes following this sort of surgery.

I'm interested in what procedures and treatments you have had as you don't have the information listed in a signature. Thanks

Karen

You just had 2 people that have had a rough go. Christine ans Eric have been fighting this and as you see, they are both knowledgeable about it. Charm is another great fighter so I am sure you will gain much information from them.

thanks for the posts everyone. they definitely help.
what i need to find out is this something that was here in january and my doctor missed it? i just had surgery in january. i am concerned.

i have not heard from my surgeon yet at johns hopkins (he has been out of town for the holiday). I hope to hear from him today. actually the second opinion is the suggestion of my other doctor, Dr. Sciubba. I don't fear the procedure, i guess i am more afraid of what i don't know. how long will i be off work? How painful and uncomfortable will i be? i don't know anything right now and i am driving myself crazy.

i definitely consider myself a fighter.
thanks
gina

Gina, have you considered Univ. of Md, Dr. Robert Ord is my doctor and he is truly wonderful, I can give you his # if you want. I will be having surgery again 4/16.....just let me know!
Carol

Gina, your questions are good but very difficult to answer. Are you asking your doctors these questions? How much of your jaw is being removed? Will they also be doing anything with yoru cheek as you have had surgery there 2x already? Depending on how much is being taken compared to what was done before, thats the only way to tell you how bad it will be. If you had alot of work done before and the docs are taking alot now then it would be comparable.

Christine,

I have not seen my surgeon yet, he has been out of town. i see him today at 2 pm, so i will get to ask questions. Monday i will see another doc for a second opinion. i assume at some point soon they will be doing scans.

According to my surgeons secretary he wants me to see other doctors at johns hopkins as well.

The doctor who did the biopsy doesn't operate anymore, but knows a lot about it. he is my oral medicine doctor.

I honestly just want to get started and get the cancer out. I am worried about how long it has been there. was it there in january when i had my last surgery?

i will write after i see my surgeon.

Gina

Gina, best of luck with everything, it is a lot to deal with it!

I met with my surgeon at johns hopkins thursday. he wants to remove my right lower jaw and replace it with a bone in my leg. I will get implants as well. they are going to take skin, tissue and an artery from my leg and reconstruct my jaw. i need to get a pet scan to see if the cancer has spread and an MRA to make sure i have two arteries in my leg (can't take one if i only have one).

And they are taking skin my hip to cover the area on my leg. it said i will be limping for awhile and the swelling will go down in about 6 months.

The surgery is on the 26th and it will last all day apparently. i will be in the hospital for 7 days approx. i will have a g-tube for a few weeks. he said if everything goes well (and that is a big IF according to him) i should be able to return to work in approx 8 weeks.

Those are the highlights i think, it's all overwhelming for me. I don't know how to process all of this. So for now i am trying to maintain some sort of normal life, but i am struggling.

Gina

Hi, Gina,

My husband had the same surgery that you are having. In November, he had a fibular graft with a free flap from his right leg. Then a skin graft from his right thigh to cover the donor site. It was a long surgery but a successful one. They removed the compromised bone, realigned his jaw with a titanium bar then placed the fibular bone with the free flap. It is a challenging procedure but he did well. Prior to his surgery, he was not able to eat because his jaw was out of alignment. We were really pleased with the results.

The pain in his leg was worse than the jaw discomfort. Clark limped a bit, too. He also has a PEG tube. Not bad at all as he was not able to eat by mouth right away.

You can do this. It will be a challenge but it is doable. You will need some help during your recovery. So take advantage of all the offers people make. Will you be getting a visiting nurse when you return home?

Pack on some calories now and line up some friends, family to help you.

Wishing you the best with your procedure--
Anita

Anita,

thanks so much for you post. it helps so much to hear about others going thru this and making it out the other side ok. i guess i would feel better if i could do this now. waiting is difficult for me. I have a great family and friends, they always take good care of me when i need their help. can you tell me about the swelling in his face? how bad was it? emotionally how did he handle the long recovery?

thanks so much
gina

Gina,
I had the fibular replacement last year. The surgery is indeed long but today I am doing very well. Do line up help for after. I am sorry that I did not ask for home assistance with housekeeping as one of my doctors suggested. I had a visiting nurse and physical therapist for a few weeks. Although I had ocupational therapy in the hospital only one home visit was required.
The biggest problem I had was that we have a two story home and there was no way to set up a place for me downstairs so I needed help for a while to let people in and out and to bring my walker up and down stairs and to bring me food. This was only for a very short while.
I also had a problem with getting into the tub. The tubs were too high for a shower bench which fits over the edge so I was stuck with just washing up. Because we have sliding doors on the tubs and I did not see the sense of taking them off to remove the frame, storing and then putting them back on a tub for a few weeks until I could put weight on my leg. After about a week at home I finally decided that the toilet was close enough to the tub that I could put the lid down,sit there, fold a towel over the door frame for cushioning,put my weight on the good leg, sit on the towel, swing the good leg into the tub and then stand on it and then very carefully shower.
I would recommend Crocs and thick socks as they can accomodate the swelling in the foot which persisted for many months. Also try to keep your leg elevated as much as possible.

Today, I am pleased with the results of the surgery and feel that it was worthwhile.
Best of luck,
Malka

Gina,
I'm right behind you. I just had a PET yesterday and will see my doctor on Friday for the results. This is my second opinion and I am prepared to go for a third. I already know I need the same kind of surgery as you and soon. Good info on this forum, helping me as much as you and, of course raising more questions. I too am very scared but coming here helps ease the fear as I grow in understanding what to expect and what questions to ask. I'll be thinking of you and following your progress here!
Pat C

Gina,

The swelling in Clark's face after the jaw recon in November was minimal. And he did not have much pain. His leg was the more uncomfortable of the two areas. Getting around was slow and painful. Well worth the time and effort though. He can eat better as a result.

Emotionally, he did well. I think the more you know before surgery the better, as you are doing now. He did have some days when he would get frustrated and I had to take the hand mirror away for a while. The patch of skin that will cover your jaw will be a different color. That can be camoflaged with products. Until now, Clark did not use them but he probably will for a wedding we will attend at the end of April.

Keep in mind that healing will take time and that this surgery is to IMPROVE the quality of your life.