Hi everyone,

My mom (65) is currently a cancer patient and I'm her daughter. Her cancer was detected in April of 2012 and she was diagnosed with Stage 4A squamos cell carcinoma in the jaw in September 2012. The tumor mass is primarily located on the bottom of her chin.

The story begins with my mom losing her teeth in the summer of 2011. She visited several dentists who proceeded to tell her that she was suffering from severe gingivitis and inflammation of the gums - prescribed her antibiotics and sent her home. Overt time, more and more teeth began to just fall out. The pain was so severe that she visited the ER on several occasions. During this time, blisters also started to emerge on her chin. On her 3rd ER visit, one doctor decided to do a biopsy since all her other tests came back inconclusive and meanwhile she wasn't responding to the medications they had been giving her. The biopsy confirmed cancer. This was end of April in 2012.

Time passed, got shoveled around between several doctors and eventually secured an appointment with the ENT surgeon (no one scheduled her to see an oncologist before the surgeon - and we didn't know). This was September 2012. By this time the tumor was the size a half sized tennis ball on the bottom of her chin and it bled on a regular basis. The surgeon staged her at stage 4A, recommended surgery but also trying out chemo first. She also can't eat anything but liquids/extremely soft foods.

Since then, she's been through 3 cycles of aggressive chemotherapy and the tumor has receded significantly (externally, it looks like it's gone). It wasn't easy and she had to be hospitalized with every chemo cycle. Her jaw bone has also deteriorated and now there is a small hole in the bottom of her chin.

We're at a point where we have to figure out the next steps in the treatment. We've seen the ENT surgeon, a plastic surgeon, and supposed to talk to the oncologist and a radiologist. The surgeons seem to want surgery but the information they've communicated about the success of the surgery are very grim. In fact, I'm not sure if I understand all of it - let alone my mom.

The surgeon told us that he believed the success rate of the surgery is 20%, 14 hour surgery where they would remove her bottom mandible and then the plastic surgeon would try and reconstruct some of it. If they are fortunate, they can save her bottom lip. The risks are (assuming she makes it past the 14 hour surgery) that she may lose her ability to speak and eat (even liquids) - in that case she would need a feeding tube. Rehabilitation from the surgery would be about a year long. They mentioned that we should take "quality of life" into consideration when considering surgery. On the other hand, if she does radiation. The surgeon said he would suspect that the cancer may return in 6 months to a year. And we would start the treatment process all over again with a decreased chance that it would be as effective. Also, if she decided to do radiation, surgery would not be a good option because of the radiation damage to her facial tissue. The ONE thing working in her favor is that she's healthy in the sense that she doesn't drink or smoke - says the plastic surgeon.

It's just my mom and I living in CA and trying to figure out these decisions. My mom is clearly overwhelmed. And, I'd like to be supportive, but I'm trying to wrap my mind around everything that's happening.

So this is where we are today. Lost. I'm trying to finish school and take care of my mom the best way that I can. Looking to learn more.

Thank you for listening/reading.

Hi there:

Just saw your post and wanted you to know that you will be getting many responses soon from some of the more informative members of this Forum - others who have experienced what your Mom is experiencing. I'll pray for your Mom and a sucessful tratment.

julieann

Hi, nayucla,

I am sorry that you and your Mom are going through this. My husband was Stage 4 also and had his mandible rebuilt and the surgery was successful. Your Mom is healthy and relatively young. You may consider getting a second opinion. Are the doctors you have seen at a Comprehensive Cancer Center? This link will show you NCI recognized centers in the US.

http://oralcancerfoundation.org/resources/index.htm#centers

I wish you and your Mom a successful outcome. This is a tough road but there are many on this forum who have been there and are living meaningful lives. Keep us posted. This is a wonderful place for information and support.

I am so sorry to hear this. I am so sorry I cannot be of help but I will be thinking of your Mum, I know how hard it can be.

Thank you everyone.

@AnitaFrances. Yes, she is being treated primarily at UC Irvine (University of California, Irvine). What was your husband's experience like? I have no idea what to expect. She can only eat soft foods (mostly soup) or speak as well as she used to. Facial disfigurement has already happened. How much worse does it get? What does survival rate of 20% mean? Initially, they didn't even want to give us any estimates, so I don't understand why now.

So many questions...
Thank you for the link as well.

Nay, welcome to OCF! This is a very good place to get correct medical info and support to help both you and your mother.

A mandibulectomy is a major operation. It is very complicated and yes it does have its risks that go along with it. The best thing you can do is make sure your mother is being treated at a top notch cancer center. In this type of situation a second opinion would probably be a very good idea as well.

Here is a list of easier to eat foods. This might be helpful to your mother since her eating is compromised.

List of Easy to Eat Foods


Usually after a mandibulectomy the doctors will want the patient to heal for a full year before they will attempt doing any reconstruction. I did have a plastic surgeon working right along with my ENT during my mandibulectomy surgery. But he would not do any other reconstruction until after I had healed for a year. As part of my check ups, I would also see my plastic surgeon right along with my ENT. It was one long year for recovering from the mandibulectomy. I had complications that not all patients will go thru so I may have had a rougher time than many others have.

I can honestly say my quality of life is not anywhere even close to what it was before i got cancer. I have many limitations but even with daily struggles, I have learned to adapt to my situation. I do live a very full and happy life. I find helping others is a very positive way to spend my time. Even if your mother has some facial disfigurement, she still can live a good life. Being different is not very easy with everyone so hung up on appearances. It takes a strong minded person to be able to overcome their insecurities and continue on with living their life as close to normal as possible when they have become disfigured. It can be done successfully but it takes alot of work to overcome any insecurities a person can have about their appearance. I still go out in public all the time, I have even done public speaking. For many people we are all own worst enemies and think we look much worse than we do. But to someone who really is disfigured, especially when its their face just going out in public can be a giant hurdle to get over. When I was recovering, I kept telling myself "time heals all wounds" and in time I was better.

Anita's husband and I went thru many of the same things around the same time. She is a great caregiver and Ive been lucky enough to meet her in person a few years ago. The info she has given you has been very good.

Wishing you all the best with everything! please dont hesitate to ask questions, we will help you as much as possible.

Best wishes!!!

Hi there and welcome. I can't talk to what your mother is facing because my cancer was different, however Christine is a pro. She's a 3 time survivor and had been through what is facing your mom. Drs. Have to give to a worse case scenario but they don't know for sure that cancer will return, no one does. It's a numbers game. I would suggest doing what you can to stop it n its tracks. If your dr says its a 20% success rate for this surgery I would say get another opinion from someone tops in their field, as you know some surgeons are more successful than others, ideally they will do he surgery then chemo radiation. Best of luck

Nay,

My husband's doctors never talked about percentages, so I can't comment on that. I am glad to hear that your Mom is at a major hospital. But having said that, I might still consider a second opinion by a surgeon who has done hundreds to thousands of this type of surgery. It is not unusual to ask a surgeon how many procedures of this type has he/she done. Your current surgeon should not have any issue with you requesting a second opinion if you decide to pursue it. It is very common and done all the time.

In his initial surgery, my husband had three teeth and a large chunk of his jaw removed. The remaining jaw deteriorated from radiation induced necrosis 21 months later. My husband had a mandibulectomy with a fibular graft. Three pieces of bone are notched out of the fibula (non weight bearing bone in your lower leg) along with blood vessels and some soft tissue.

A Plastic Surgeon and an Oralmaxillofacial Surgeon work as a team rebuilding the jaw. A titanium plate is attached to the mandible to stabilize the jaw while it heals. Before the surgery, my husband's jaw was disfigured and his bite was completely off center making it impossible for him to chew food. At that time, he was also on a PEG tube for nutrition. He had that placed before radiation. And while he wanted to get rid of the PEG, we were so glad he still had it as it helped his recovery from the mandibulectomy.

He seemed to have a more difficult time with the pain in his leg than with the jaw. He had to use a walker for a while to get around. The wound took weeks to heal. I hope I am not scaring you. It is a big procedure but you must know that today my husband is on the treadmill a few times a week, and plays golf when the weather is warm.

He had several more plastic surgeries to fix a defect on his face from repeated infections. All of that has healed nicely and he eats almost as he did before cancer. The only things he does not handle well are meats like steak and other foods that require a lot of chewing, He just gets tired of chewing and he lost his taste for foods that require that much work.

A lot of my cooking today is focused on providing tasty meals that are more soft. Every morning he has crispy bacon, and english muffin with lots of spread, a banana, and skim milk.

For a long time, my husband did not have much of an appetite and the PEG helped him get what he needed to heal and survive. He still has a large skin graft that is visible to all but he gets out there and is living life.

My best to you-
Anita

This is a very difficult situation, and I think that the other posters have already done a great job of answering your questions.

But the one thing that stands out to me, is that there is no comment that you mother was seen yet by anyone from radiation. This makes me wonder if she got this far seeing doctors at UCI with no tumor board being convened in the hospital to discuss her case and make a group recommendation as to how she should be treated and what is the best treatment course for her.

Clearly you are talking to several different surgeons, and given that, I can see why you are getting surgical solutions to the problem. When most of us went thorough major treatment, we had our case reviewed by doctors of all cancer disciplines before anyone told us what to actually do. When as a group, doctors from different training come up with a treatment plan, it is usually some combination of al their therapeutic skills, not a singular approach ( though your mothers case may be unique). I would just confirm with one of the doctors that her case has been reviewed by a tumor board, and I would make sure that the radiation oncologists opinions are being considered in any final plan. I don't think there is a way for a surgeon ( or even a radiation oncologist) to know for sure that if you have radiation that it will come back, and I find that comment odd for him to make, unless he has already reviewed the case with the radiation oncologist who does not feel that radiation would be curative.

Ditto what brian said.