I really don't know where to begin. On August 20, 2014, we arrived at the Mayo Clinic to treat osteomylitis. He was on three different types of antibiotics to treat the infection. He even had several different types of IV antibiotics but nothing was working. He lost most of his bottom teeth. He only has 4 teeth left. The Drs said it must be resistant to anti biotics and the infectious disease guy will have to exam him and find the correct antibiotic to use. It started with one lump. But it turned into several lumps. The Drs in our home town said it was from the infection. But within the first five minutes of our appt at the Mayo Clinic, the Dr. said it was a tumor. They began testing. CT scans, MRIs, PET scans and x-rays. By the end of the day it was confirmed, it is cancer. My boyfriend was just diagnosed with Oral Cancer Stage IV. It was not an infection eating away his jaw bone. It was cancer. As I'm sitting in the office listening trying to fight back the tears, I'm thinking I'm not ready for this. We are going to have surgery to remove the tumor, cancer, part of his tongue, his jaw bone, all his teeth. Then radiation for six weeks. He is gonna have a feeding tube. He is gonna be disfigured. He won't be able to talk the same. I love him so much but he doesn't really talk about how he is feeling. I don't know how to help him. What's gonna happen??????

Hi and welcome to OCF. We wish you didn't need us but we're glad you found us. This is an extremely scary time for you both. No one is ever ready for this.

Firstly none of us here are doctors, mostly we are patients and carers, but we've all had our share of the same bumps on the road. As for the misdiagnosis I can only guess that the symptoms were pointing at an infection. There's not much to be gained in pouring over how you got here.

A few questions if thats ok. How old is your boyfriend? Did the doctors indicate what they think caused it? Has it spread beyond his mouth and neck? It sounds like they are holding chemo in reserve, is that right? They normally make a choice of two of the radiation/surgery/chemo and keep one in reserve.

Some general advice straight up. Be very careful what you get from the internet. You can scare yourself silly very easily and it is not helpful. The internet is good for helping you understand what the doctors tell you in the limited time they have with you. Use it to frame questions that you want to ask next time you see them. Get a notebook, write down questions, appointments, medications.

You'll get sick of suggestions to "stay positive" but a positive attitude, especially from you, is enormously important.

Notreadyforthis,

Unfortunately for many of us, we get passed around while the cancer spreads and end up State IV. It's too common.

I'm really sorry you and your boyfriend are facing this but know many people have made it through this. Disfigurement must be rough, but life saving measures are what it's all about.

I'm sure your boyfriend will begin talking with you about some of this. For some of us, the initial shock has to be processed as the treatment plan is developed. I hope the Mayo or another Comprehensive Cancer Center is the treatment choice. With more advanced cases like this, you want experience and the latest treatment options.

Best wishes for the best possible outcome.

Sadly this story isn't uncommon. I'm thinking you are younger and he is too this being the case this cancer can be very aggressive, and yes they will do what they have to to help him. Unfortunately being passed around and misdiagnosed wastes a crapload of time and allows the cancer to spread. Usually if it is a young person only an experienced ENT (who very is familiar with oral cancer) would know to check for it. It's not common in the young though we are seeing a lot more of it these days.

Disfigurement is a possibility. But a good plastics guy, and talented surgeon can minimize the damage depending on how extensive the cancer is. He will have scars but if the jaw replacement (I am assuming they are doing one) goes well he will look close to normal. If his body rejects the grafts or the cancer is persistent then it up there could be some issues with disfigurement but that's a hurdle you'll cross when the time comes. At this point survival is primary.

A feeding tube is nothing. If all goes well after surgery and treatment - he should be able to have it removed - dental implants in his new jaw are a possibility down the line and speech should return.

Some of our members have their whole tongues removed and can talk and taste.
Some have had half jaws and whole jaws. An some - years after treatment are still improving.

Hopefully he will be a best case scenario - hugs and blessings to you.

Thanks, OzMojo,
He is 39 years old. It has not spread beyond the mouth and neck. They said without surgery, he may only live another two years. They said something about 50% chance of it working. They do seem confident that they can do the surgery. We have seen so many doctors and its only been a few days. He has been in good spirits though. They wanted to do the surgery on Monday 8/25/14 but he doesn't want to do it right away. So we will be doing the surgery sometime after or on 9/11/14. He wants to go home but I'm afraid that if we do he won't want to come back. He keeps saying I only have to years and will you stay with me until I die. I have been reading far too much on the internet. But reading some of the posts on here I feel like I have come to the right place.

Uptown,

Thanks for the wishes and you are probably right about not dwelling on how we got here. Hopefully it all goes well.

Cheryl,
Yes we are in our 30s. I feel angry that we wasted time but with all that has happened in the last couple of days. I think we are going to be ok. He talked a little to me last night. He said he doesn't think its all hit him. He is more worried about his appearance after surgery. But I was worried about his talking and eating. He also said he might just dissappear. I'm sure he got this from smoking and I keep asking him to quit but he says I already have cancer. I don't know if I should just stay quiet. Thanks as well for the wishes.

Well I'm so glad that this place is available to us. I told him about it. He said tell them everything but I think maybe if I can get him to read some of the survivor stories he might feel better about the surgery. I just hope he don't change his mind about the surgery. Thank you all for allowing me to express my feelings and concerns. You give me hope.

Notreadyforthis,

Just so you now and hopefully you can share with your boyfriend, I was told less than 25% with or without the surgery. I had 2 known nodes on scans but both in level 1and the team decided to hold off on the surgery and save it for a recurrence salvage surgery to give me a year after that. The 50% number is really good! It would get a baseball player into the hall of fame. I remember telling my team that even 25% would be all star level.

As far as the 2 years, that is also a guess, albeit a highly educated and experienced one. I have been told by several doctors I had days, weeks and months left. At one point I was told any hour for many weeks. That was almost 2 years ago. No one really knows and living in the moment is my motto now.

I use statistics a lot in life. My focus has been using historical data to ask questions, not provide concrete answers.

Grab some coffee and hang out on the main OCF site if you want some science based information. It's much more realistic and you can be assured it's been reviewed by people with science based minds, not just random Internet craziness.

There are many of us around here that would also welcome any personal messages or emails for more personal or more private dialogue with your boyfriend. Sometimes, especially in the beginning, it is difficult to open up and even harder to ask questions when it's all so new. Anything we can do to help each other, that's why we're here.

Hi, Notready
I'm sorry that you both have to face this at such a young age. You have already gotten a lot of great advice for your boyfriend - but I want to add some advice for you. The next few month will be as emotionally distressing for you as him. This site will be supportive, as well as prayer or meditation (or both), wise friends, perhaps a counselor. Remember to be good to yourself so you can help him.
One of the batches of statistics I have looked at showed a strong corrolation between the marital status of married and improved survival. The conclusion of the study indicated that having a spouse (or significant other like you) made it more likely the patient would be able to complete the treatment on protocol - a very important factor in how successful it is.
I am guess that you feel pretty helpless at this point - but I have confidence in you and your ability to help.
Keep posting - we will be rooting you on.
Maria

Hello and welcome to OCF, wish it would be on more pleasant circumstances. First, be very happy to be at Mayo and in the hands of experts. Nothing you can do about the past messups, focus all your energy on being a good listener to what is coming at you now. It may feel like drinking from the fire hydrant but read as much as you can from places as this site and get informed as rapidly as you can.

This sounds like a long and extensive treatment plan and it is going to be rough but he will get through it. So will you. There are going to be some tough stretches but stay close here and post whenever you have questions or need so advise.

Good luck,
Don

Thank you all so much. Today is a little better. Monday we have more appointments.

Okay on the smoking -NO - he should absolutely quit.
Two stats -
1) people who continue to smoke decrease their survival rate by 30 % that's a HUGE number. Walking (exercise - like walking a dog) and deep breathing help. Most cancers like a hypoxic environment - less oxygen better chance to grow.

2) smoking takes up space in your blood that oxygen would occupy - healing requires oxygen

To continue to smoke is a BAD thing.

He has a good chance of survival assuming he does stop smoking and quickly follows through with treatment - ideally he should have jumped at the first surgical date - but that's a missed opportunity so a moot point now.

Ps smoking particularly if the dr knows he is still doing it - tells the drs... I don't care. So why should they put all that effort into healing someone who is working against their own survival. They'll never say it to you but they're human, and as such do make judgements.hugs