Hi,

I am so happy to have found a place where I can talk to others. My mom was diagnosed with squamous cell carcinoma in her jaw 2 months ago. 3 weeks ago she had a 14 hr surgery to remove & reconstruct 1/2 of her jaw as well as the lymph nodes in her neck. They used her tibula bone to reconstruct the jaw. She is struggling physically b/c she is unable to walk and has a feeding tube so her mouth can heal but also mentally she is having a hard time. It is my understanding that her case is pretty extreme so if there is anyone who has or is experiencing the same thing I'm wondering about her recovery and what we can expect. We have a follow up dr. appt Mon and it just occurred to me after registering that they never gave us a stage so I'll ask then. Thanks!

Hi, welcome to OCF. Im glad you have found OCF to help guide you. This is a huge surgery and takes a long time to bounce back from. Since your mothers surgery was only 3 weeks ago, it will still be several more weeks before she begins to feel better.

I have had the same operation except for the leg bone. My doctors kept me asleep for 3 weeks after the surgery. I was in a medically induced coma and slowly woken up. I had some complications and ended up staying in the hospital for 2 months. This is important to remember, while someone has had a similar experience/procedure, everyone is different and reacts differently.

At the 2 month point, I came home very weak from the hospital. It was still difficult to manage all the feedings, meds and pain levels. I had a great caregiver who was with me for 3 weeks then I had a visiting nurse come 3x per week and lots of friends and come by daily to help me. I would say it was about 4 months post surgery that I was able to have the strength to walk around the block. I was 46 when I had the surgery, your mother may be younger or stronger than I was and could be on her feet in less time.

The feeding tube is a whole seperate thing. Most OC patients end up having the tube. While its uncomfortable and unnatural, it is necessary.

Now I am coming up on my 1 year anniversary of the surgery. While I still have my medical problems, overall I am doing very well. My situation is different also because I had already battled OC twice before with radiation/chemo and surgery. If I had to give a number, I would say I am 85% of my old self and thats ok with me

Your mom will get there, it just takes a long time. If she is struggling mentally with this, many take antidepressants. I probably should have but didnt take them, mainly cuz I didnt want to take any more meds or admit I struggled. There are several others here who have had this same operation. Hopefully they will respond and give more insight.

As Christine said there are many others on this site that have had the same surgery so it's really not that unusual. Extreme yes but not that unusual. The mental part is very difficult with this cancer and all that it can bring but please let her know or better yet visit this site herself to get her to realize that she is not alone and that she will recover and function just fine when this is over with.

Hi, Vanessa,

Welcome to OCF! My husband had a similar surgery. Last November, he also had a fibular graft to rebuild his jaw. Walking was very painful at first and for a while, post surgery, he used a wheelchair when we'd go back for Dr. appts. Today, he is doing very well, moving around and playing golf! He still has his PEG but relies on it very little.

All of this is overwhelming and it is not unusual for your Mom to feel depressed. Be as supportive as you can by reassuring her that she can do it, that you will help her, and that every day is closer to being well again.

As for anti-depressants, they can be another tool to help get her life back on track. While my husband did not take them, I did. As his caregiver, I found myself slipping into a dark void. The demands of caregiving are well documented, and can sneak up on you.

Clark's last 2+ years have been very bumpy with repeated infections but we celebrated little victories as he moved toward recovery. They became milestones and benchmarks that he was getting better.

I love that the people on this site are not only supportive and informative, some have become my friends. While Clark does not use this website, he is interested in what I have learned here and what other people have experienced.

I wish you and your Mom all my best. And keep coming back. This is a great community.

Anita

Thank you so much for your responses. I am so grateful to have found others who have been in my mother's shoes. I hope she will soon be ready to join the forum. I guess I have to take one day at a time with her recovery. Thank you again!

Christine, Anita, and all - Your strength is inspiring. Thank you for sharing your experiences with me.

Vanessa,

I've had the same surgery that your Mom has been through and it does take time to heal. I'm now 2 years out of surgery and doing good. Life has changed, and there are challenges that weren't there before...but nothing I consider to be more then minor inconveniences really.

The surgery is extreme...but not uncommon on these boards. Recovery from it can seem like a long road...I just look at it as I'm not only lucky to be alive, but that medicine has gotten to a point where they could do this surgery so I could live AND have quality of life.

Here is a video of a Carolyn Coogan, who had the same surgery to see how she is now. It helps to see there is a light at the end of the tunnel.

http://www.youtube.com/watch?v=zNW6aY0Xims

Eric...excellent video!!!!!! Boy I wish I looked that good, she is so very fortunate!!!!

Christine...you and me both dear...you and me both!

Hello. I'm introducing myself hoping to be of some help to others. I am the Carolyn Coogan (now in Arizona) whose oral cancer story was profiled by UWTV with Dr. Futran. I've never been on a forum before but stumbled onto this site quite by accident tonight. Every few months I watch my story to remind myself of how blessed I am to be alive and well. Each day I consider myself a walking miracle thanks to all my doctors, nurses, friends, family AND even the barbaric treatment! The purpose of the video, was and is to give hope where there may be none. MY first ray of hope was Dr. Futran. We all need encouragement to fight this battle for our lives. The "C" word, Cancer, was the scariest word I'd ever heard. During my seven months of aggressive treatment, there were three times when I literally prayed for God to take me. This fight was the hardest thing I've EVER done. At age 54, there wasn't one part of the treatment that my body didn't try to reject. But it was all worth it and I'm happy to report that as of this week, I'm now 6 years 8 1/2 months CANCER FREE. Not bad for someone whose survival odds were so low during treatment. If my experience can enlighten or encourage anyone, please just ask me questions. With all the many kinds of cancer, I still have yet to hear of a good one. I firmly believe that only with hope, faith and good medical care do we each have the best chance of survival.

Carolyn,

Glad you found these forums, welcome! We shared the same surgeon and Nurse Practitioner (Carol) as I had surgery done at the UW. Glad to hear you are doing well and living life.

Eric

Thank you Eric for sharing the video and Carolyn it is so nice to be in touch after watching your video last night. I hope to share it with my mom soon. It's funny because my mom actually looks very similar to you and it really gave me an idea of how she may (I hope!) look after she is fully recovered (which is fabulous by the way!!!) As all of you know, my mom has and is experiencing very low points but we just keep trying to move along. Question for Carolyn and others - Did the dr. have to remove the nerve that controls the function of your lip during surgery? They did in my mom's case and she was wondering about drooping, drooling, etc. I can see it's already a problem but they said that radiation may help tighten up that area. Thanks and talk to you soon!

Vanessa,

The facial nerve (C7) splits into several branches after it comes through the facial canal, one of which is the buccal branch that controls the orbit of the mouth.

In my situation during the mandiblectomy/fibular free flap surgery my facial nerve was damaged just as it exited the facial canal (which is really close to the mandible) and it paralyzed the entire right side of my face. I was told this could be a complication before the surgery due to how close they had to come to the facial canal and how large of area my tumor took up. Due to this complication, my lip droops on my right side, as well as other issues as the entire right side of my face is down. I actually had to have a gold weight surgically implanted in my eyelid as it no longer would blink...I've got "bling" on the inside

The drooling/drooping will never go away on it's own...what your Dr maybe referring to is that radiation can cause the loss of soft tissue that does "tighten" the area and over time the buccal muscles will atrophy due to lack of nerve impulse causing them to shrink, but in my case it hasn't made it less noticeable.

Eating and drinking will be an issue for several reasons. The buccal branch not just controls the ability to close your mouth but also fires the Buccinator muscle that contols the cheeks during chewing..as well as other muscles that help facial expression and even your nasal flaring. After two years I've learned to adjust to this and can eat most things, but I carry napkins with me all the time and wear darker shirts as it is messy to eat and drink.

Now, there is something that has a chance at correcting the issue though. I had an operation done at the University of Washington Medical Center by Dr. Kristen Moe that has a chance of reenervating my facial muscles. The do a C7/C12 switch, a nerve graft, basically replacing the damaged part of the C7 (facial) nerve and replace it with part of your C12 (hypoglossal or tongue) nerve. In my case they had to use 100% of my C12 to graft into my facial nerve to give me the best chance of restored facial function.

I'm still in recovery from the surgery, it takes over 12 months before they'll be able to tell whether it worked or not, however it gives me a chance at restored facial function. My attitude anymore is I really don't mind if it works or not...I've learned to adjust to the challenges that the paralysis poses. However if it does work...great, I've got my face back.

Hope that helps

Eric

Thank you, Vanessa. My Drs. at UWMC did a better than anticipated job on repairing me. No, Dr.s didn't remove or cut any nerves, however, the right side of my face is mostly numb & also half my tongue, so a nerve was certainly damaged or bruised. Drs. said if feeling didn't come back in a year, it wouldn't. So I've dealt with it. I've watched myself talk in the mirror to know what letters, words & expressions cause my mouth to distort the most, and try to not stress those sounds. Kind of like when your in a car singing to music & you don't want anyone to see you doing that so you don't exaggerate the sounds or words? Most people don't even notice, but I do because I remember what I looked like before. But, you know what? it's a small price to pay to still be here. Initially, I was prepared to be very disfigured because that was what several Drs., & the internet, told me. I accepted it because I wanted to survive. Dr. Futran made me feel he could get the best possible results, & when I saw the 'during surgery' photos, (which wasn't until the video was being filmed), I couldn't believe the team could even put me back together again! Try to encourage your Mom to be patient. The facial changes take place slowly over time. After she's gotten thru the shock of her surgery, & treatment & is on her way to recovery, there are some wonderful plastic surgery procedures that may help correct some of her appearance & other issues if they still exist. I did have some drooling initially, like the first 2-3 years, so, when I'd eat, I'd always have a tissue in hand to dab my right lip. I don't have that so much anymore, but am still careful to check my face. You see, I can't feel when something is dripping down that side, so checking it often is a good policy for me, wherever I am. On the brighter side, I like really spicy foods now because only half my taste buds work, you know, because of the tongue thing. So I have to be careful when I cook for others!

Just this year, because my right cheek was still sunken a lot from all the tissue removed around the tumor, I decided to have some of my fat injected into that area. Now my face is a lot more symmetrical & I feel much better. It still droops a little if I'm especially tired.

Please give your Mom a big hug for me & I will pray for her. Another thing, when your Mom has low points, try to be upbeat & compassionate but don't have a pity party. Cancer cells love emotional low points. My nurses always told me that getting thru cancer is 90% attitude & 10% treatment, & I believe it.

Wow, what a coincidence? Dr. Futran & Carol are the BEST!

My dog & I are leaving on a long road trip 8/23 & going to visit my uncle, 74, in NM, who recently was diagnosed with Non-Hodgkins lymphnoma, & another friend, 34, in CO who's has had cancer & Drs. just found a different spot which was biopsied yesterday. Then on to visit friends in Boise, mainly one, 70, who's still trying to bounce back after fallopian tube cancer. She had a 14 lb. tumor growing before Drs. figured out what it was. I'll make my way up to MT & Spokane to see former mother-in-law, 83, who had lung cancer surgery 2 years ago. I hope to see Dr. Futran & Carol when I go over to Seattle then work my way down to Bend to see friends & family there & especially a friend, 77, who is just getting over breast cancer. Then on to Lodi, CA. where I'll see a previous stranger, 65?,now friend, who heard about my diagnosis from ?? & called me to encourage surgery. He had squamous cell cancer, also found under a tooth, & had surgery right away & is still cancer free now 8 years. At the time, he emailed me photos of his appearance after surgery, which convinced me to go ahead with my surgery a.s.a.p. His surgery was the same as mine except on the opposite side of the face & Drs. opted to cut down the middle of the chin. Dr. Futran chose to cut ear to ear on me. I do believe that CANCER has touched everybody's lives in some for or another. It's just a dreadful disease but thank God for the available treatments & for friends, family & forums for support.

Vanessa, just had another thought. For your Mom's low points, one of my friends loaned me several old I Love Lucy videos to make me laugh. Laughter is very uplifting, so you might think of something like that. Comedy is great medicine. It helped me.

Carolyn, you are beautiful!!!! I was so amazed at how wonderful you look after having that type of surgery. To be honest, I am quite a bit jealous Ive had similar surgery and it originally failed and it had to be redone. The end result is not very attractive at all. I am discussing more surgery with my plastic surgeon to redo my jaw sometime in the near future. Your video gave me hope. Thank you for making it!!!!!