My name is Amber, I'm 29yrs old and and the daughter of a very brave man battling oral cancer.
My father just turned 60 back in November and has been battling cancer for a little over three years now. He thought he had bit his tongue in his sleep and it didn't heal for some time, they decided to do a biopsy and discovered he had cancer. He lost about 1/3 of his tongue that time. The second time they found cancer it was in his gums. Everytime we think he has it beat, it comes back.
I'm here right now because frankly I'm scared to death and worried sick about my dad. He's scheduled for surgery on 02/01/05 and it's not going to be just a couple hours in surgery it's going to be all day. He's losing a majority of his lower jaw bone, they are replacing it with bone from his leg. They are also gonig to take most of what's left of his tongue and build him a new one (not sure how that works.. I was in shock when they got this far in telling me). He will have a tracheotomy and be on a feeding tube.
My mom and dad are handling things pretty well. Dad hasn't complained about the surgeries and having cancer, his only complaint is that he has a lisp and slurs his words occasionally. Mom is taking things a day at a time. I wish I could be as brave as they are.

Amber,

Welcome to the OCF site. I'm sorry you and your family have had to experience this over the past several years, but you'll find a group of people here who can offer support in many different ways.

What stage was your father's cancer when he was diagnosed? Has he been treated in a major cancer center? Has he had radiation at any point in his treatment? If you can give us a few specifics, you're likely to hear from others who have had similar diagnoses and can give you their thoughts.

Unfortunately, this disease often seems to take as much of a toll on the caregivers as it does on the patient. Please try to be strong for your Dad -- I think as you visit this site and learn more about those who have been through difficult treatments and survived, it may help you deal with his situation.

Cathy

Hi Amber,
I had the surgery your father is getting ready to have and it's really not as horrible as it sounds. I was in the hospital for 11 days, and after the first 5 days was feeling pretty good. I had no pain at all in my face or neck, the only pain I had was in the leg where they took the bone. Pain medication will keep that under control. I had the surgery on April 16th, 2003, almost 2 years ago, and I am amazed with how well I look and that my leg is close to normal. My leg does have some definite weakness and gives me some issues, but nothing I worry to much on.
Has your dad had radiation at all?
Take care and know that your dad can do this. The tracheotomy will be the toughest thing for him to handle. I was very scared of it for the first two days but found a way to relax about it.
Take care,
Minnie

Cathy, I'm not sure what stage? No he hasn't been to a major cancer center.. it's all been done at the local hospital. He will be getting radiation after this surgery.

Minnie, thanks for the reassurance. I'm glad you have healed well. Gives me hope for my dad.

Thank you both for the welcome and kind words.. it means a lot.

Amber,

I would STRONGLY advise your father to get to a major cancer center (there is a list of them on this site if you look in the "Other Resources" section). Oral cancer can be very tenacious and sometimes very aggressive and it typically needs to be attacked with the concerted, multidiscplinary approach that you find at a comprehensive cancer center. If you read about the experiences of others on this site, you will find quite a few who started at a local hospital, had a recurrence, and found with hindsight that they would have been better served by treatment at a cancer center from the outset. I know that this can mean some additional travel compared with a local hospital, but in a situation such as your father's where the cancer has returned more than once, the extra level of caution can be worth it.

Cathy

Amber,
I can't think of one reason why your father hasn't had radiation yet other then the fact that he is not at a major cancer center. In your position I would be taking my father for a second opinion and quickly. Brian can help with finding a good facility in your area, as can Gary.
Take care,
Minnie

Multiple recurrences are very serious business - you must get him to a comprehensive cancer center for a second opinion so that there is no second guessing of the treatment plan. Tongue cancers tend to be more aggressive than other forms of oral cancer are almost always initially treated with radiation as well, usually in conjunction with chemo and/or surgery.

Your parents sound very brave - what a wonderful role model they are for you.

Dear Amber,

Good luck to your Father as he starts another round of treatment. I would heed the above advice about getting a second opinion and also at a major cancer center who see's alot of head & Neck Cancer victims. You want your Father to have the most up to date treatment he can get.

Best Wishes, Danny Boy

He's been seen at Balboa Naval Hospital. Not sure how up to date they are? He has an oral surgeon, a radiologist (I think thats what they are called?) as well as a handful of ENT doctors that have been seeing him for the last three years. He will be getting radiation after the surgery. They talked about sending him to Long Beach to have it done?

I'll take a look at the cancer centers for mom, maybe she can talk him into going to one.

They haven't done any chemo at all and haven't talked about it, except to tell us that if the cancer comes back after radiation they can't do anymore radiation and they will have to do chemo?

Amber,

Like Minnie, I had pretty much the same surgery. My tongue wasn't involved, but lymph nodes were. I lost half of my jaw and had a fibular (leg bone) graft. Surgery lasted 14 hours and I was in the hospital for 14 days. When I got back on my feet, I started radiation treatments -- 7 weeks. That was 2 years ago.

Your dad's got some hard work ahead of him, but he can do it. I agree that he should have a second opinion. I was treated in Orange, CA at the Chao Family Comprehensive Cancer Center at UC Irvine Medical Center. It is an NCI designated cancer centers.

I'm not going to say one bad thing about naval hospitals, because I just don't know. However, I do believe that I was treated well at UCI.

Good luck. Your dad is lucky to have you on his side. Your mom, too. It's normal to go numb when the doctors start talking about all this stuff.

Suggestion: I wish I'd kept a journal throughout this experience. Symptoms, treatments, questions, answers. Maybe you could start one for your dad.

Ken

Amber, was your father in the military? Is that why he is being treated at the Naval Hospital? If he can, I endorse the other opinions voiced here, to get to a comprehensive cancer center. Anything less and he is rolling the dice with his life. Oral cancer can be extremely aggressive. Radiation with chemo is often used to stop any traveling of the disease to other parts of the body. It is common to have the initial tumor spread the disease to other areas of the body, lymph nodes for example, often before the patient even knows they have cancer. So if it is possible, have him go to a cancer center where they know as much as is known about this disease and have treated hundreds or even thousands of patients with the same methods. God bless you and your family.

Yes, my dad was in the military. Served 24 years with the navy as an enlisted man and another 6 years as a civilian.

His first surgery they took some of his lymph nodes from the neck? The cancer is on both sides of his jaw this time around according to the CAT scan today.

I will ask mom about getting a second opinion for him. Thanks for the information, it really helps.

Amber
I just wanted to let you know we were thinking of you and your family ..listen to these folks ..they have been there and they know.
Your folks are lucky to have a daughter who cares so much.
Take care
Marica

Amber,

I am really sorry to hear about your father. I am glad you have joined us and hope your questions get answered. I am hoping for the best possible treatment plan so your dad can get this behind him. Best wishes to you and your family.

Ed

Dad and mom decided to go through with the surgery and stay at the Naval hospital because they trust the doctors. The surgery went well, took 18 hours though. The nurses and doctors dubbed my dad Superman because he's healing really well. The second day they did something to the tracheotomy so he could talk to us, they said they didn't expect him to talk for a few more days. His wounds are healing really well and the graphs are taking. He came home on Tuesday after a week in the hospital, he's got a feeding tube and will be on it for about another 4-5 days.

Ok, I'm babbling. I'm just so relieved that he's ok. He starts radiation after he's healed for a little while.

We've got spreadsheets of his progress, what he eats, etc. We made one for his meds and another for his blood pressure/pulse/tempature and decided that we needed one for his progress and what he's eaten and how many cans of Jevity he has taken and so forth. The doctors were impressed and jokingly asked if we wanted a job.