Hi Everyone,

I am writing about my 81 year old mother, who has been treated for cancer in her jaw for the last year and a half. Six months after 3 chemo treatments and 7 weeks of radiation the cancer recurred (she continues to smoke). On July 10 she had surgery to remove most of her lower right mandible, some tissue from the floor of her mouth and a large section of her cheek. He replaced all this with a graft of bone, skin and tissue from her lower leg. The surgeon also removed all of the lymph nodes on the right side of her neck and performed a tracheotomy.

Because she had so much plaque in her veins, the doctor is worried that the flap will fail and they have even used leeches to try to get the blood moving through the graft. Four days after her surgery she is still in ICU and is heavily sedated because she seems extremely agitated.

Has anyone else experienced this type of surgery? Assuming the flap "takes", what will the next few weeks be like for my mom? If the flap fails, what then?

Oral cancer patients who smoked comprise 75% of all patients. Oral cancer patients who return to smoking or continue to, are vastly more likely to have a recurrence than those who give up tobacco... in fact while the statistics are not current, continuing to smoke will just about guarantee it. Smokers have the highest failure rates for grafts in studies currently underway. I guess by this point, my point is clear.

I have seen patients who seem agitated from nicotine withdrawal in the hospital environment, while others become so for explainable psychological reasons not related to the withdrawal process. If the graft fails, it will be removed. Poor vascularization is not a good indicator for successful in grafts. It should take less than 4 weeks to determine if this graft is going to be successful or not. We have many posters here who have been through the procedure, and I will leave that portion of your question (what to expect) to them. I wish her the best possible outcome.

Jane,
My husband had a similar surgery in which part of his iliac crest and surrounding tissue were used to form a cheekbone, palate, cheek, eye socket, etc.

Actually, he has had 2 'free flap' surgeries - and both times, he had trachs and he was in ICU for 4 days. The first time, he was in the hospital for 16 days and then stayed at the hospital guest house for 7 days and had daily dressing changes. We had trouble with some of the skin grafts taking, but the flap did well.

The 2nd time, he was in the hospital for 7 days and went back 7 days later to get his stitches out.

It has been 5 weeks since his free flap surgery and he still has a lot of pain in the neck, ear and shoulder - but the incisions have finally healed.

I asked the surgeon, too, 'what happens if the flap doesn't take?' and he said that they have to take it out. I don't know if that's always the case. The flap seemed to enhance the result, but in his case, he would not die if the flap did not take...he would die, if he didn't have the surgery.

In order to optimize the healing chances for this and for other post-radiation surgeries, he has undergone many sessions of hyperbaric oxygen treatments (before and after surgeries). We really think that that has helped, but it seems to be controversial.

If you think I can be of any help, please don't hesitate to email me personally. I'll be happy to share anything. This is tough enough to see someone go through, without the added frustration of their smoking. I'm sorry to hear that.

I hope the leeches have helped. Please keep us updated, and let me know if you have any questions for me, personally. Am sending you warm hugs and good wishes!

Sincerely,
Betty

Hi, Boy I had to answer this one! I had this same operation, my tumor was reoved and they did the same operation at the same time 12 hours or more.I was a smoker , this probably does"t have anything to do with what she's goint through, I was 56 so I can't imagine what she feel at 81,This is a big shock to your body, I immediately felt frustrated i couldn't do anything for myself, I wrote what I wanted but you can tell no one really wants to take time to read it unless you have a big problem.Takes too long , we live in a fast paced world.When she gets in a regular hospital room it will be better.My flap failed within 3 weeks, I was home and doing well. They remove it put football helmet outside bar on, keep you for a week or more to be sure everythin is ok.If it fails e-mail me and I'll tell you what they do next. It's less of a problem than the original surgery.A nd I'll tell you one thing she WON't BE ABLE to smoke for a long long time. gnelson

Hi Everyone,

I'm back to update you on the struggle my 81 year old mom has been through during the last few months. The flap did take and she came home with a trache and the feeding tube. It has been 4 months of 24 hour nursing care. The trache was removed once but had to be reinserted because she choked on her mucous. It was finally removed, hopefully for good, 3 weeks ago. She has been trying to eat but with no teeth most of the food ends up on her chin.

Anyway, to make a long story short, it appears that the cancer has recurred only 4 months after such a major surgery. Two hard lumps have shown up on either side of the graft and one has puss and blood oozing out of it. The doc has ordered a CT scan, but we have seen this very thing happen twice before and I'm very scared for her.

At 81 years old, when do you say enough? She barely survived the last surgery. What will happen if she chooses not to do any more treatment?

My gosh, Jane, what an incredibly tough situation for both you and your mother. My heart goes out to you both. As to when enough is enough, I guess that has to be her call. I cannot tell you what to expect if she declines further treatment, but I am sure her doctor can. Given the movement to prevent pain and suffering, at least you can be certain that drugs will be available to deal with pain. Let us know how you are both doing. You have friends here.
Joanna

Thanks, Joanna. Mom had the scan last Tuesday so we should get the results hopefully early this week. She stayed with me for Thanksgiving and in spite of everything seems to keep a positive attitude.

Can you believe it's been almost 3 weeks and we still do not have the results of Mom's CT scan?! When we call the doc's office we are repeatedly told that he will call us back after he has had a chance to look at the scan. My husband, who is a dentist, finally called and after being put on hold for 20 minutes was told that the doctor has been out of the country since Thanksgiving and won't return until December 27th! The nurse said the scan looked "suspicious" so they would probably order an MRI, and she would call my husband back the next day. She nor anyone else at the office has called back.

In the meantime, Mom has developed a really bad infection so we took her to her primary care doc and he got her in to see a new cancer doc. Our anger and frustration regarding the lack of care she has received from the USC Head and Neck surgeons is the topic of a whole new post.

My question here is that the graft site on her lower leg is getting very red, even dark purple near the ankle and she says it is very painful. Any ideas on what is happening there? The site is still healing (5 months after the surgery) but was looking better until a few weeks ago, coincidenatlly about the same time her jaw and neck flared up again.

Hi,I am recovering from surgery so my typing is bad.We have e-mailed before, I had the same operation as you mom but mine failed. The flap may be infection rather than cancer, blood and pus was what I had in my last infection, and they biopsyied regularly because I thought the same thing. No cancer. I had several surgeries after failure, so it is hard to relate recovery to your Moms but I was allowed to eat after 5months, get her to try putting food at the roof of mouth and softening, then swallow, with a little work she can keep most food away from front of mouth.The leg I walked on early and was doing a mile a day or more on by 5 months, I am a lot younger than your Mom and have always had strong legs. My leg changes color once in a awhile and will get painful if i set too long or not exercise it regularly. I do not think leg problem related to jaw problem. I am not a Doctor, and yours should of had someone cover your MOMs case while he was away , if for nothing else for peace of mind thatyou had one to question. I would be angry also.You said once you mom had poor circulation, this could cause some of color changes in leg. Keep us updated. gnelson

Gnelson, when you said your flap "failed" what do you mean? And what kind of surgery did you have after that? I guess I'm wondering what my mom might be in for next.

Hi, The flap was no longer living tissue, got an odor very quickly.They caught at check up and set up operating room and removed immediately. (I am treated at a large medical center, Doctors office and hospital in large complex). They kept me for 3 weeks to be sure infection gone. In fection at that level can be very dangerious.I had no lineing in my mouth and there was an outside bar on my face that resembled the front of a football helmet. That was to support face bones. I lived on PEG tube all this time. They then brought up flesh from shoulder to chin to cover a bar put inside my chin , to assure blood flow it was attached, looked like babys arm. After 6 weeks they brought it back dowm and relaid it on shoulder , the piece they kept on shoulder, needed to be covered on shoulder, so they did a skin graft from leg for that. This was the easiest two of flap type operations I had, it worked for me to eat and talk and grow strong. If I were 81 I would stop here, She can live normal with this, she will just look a little odd.Because of her age they can only remove part of flap, or remove and let her live by tube till she is strong. Keep us postedgnelson