My husband was just diagnosed with oral cancer - 1 week ago. We are still in the testing stage to see if any nodes are involved. ENT said it is T-1 maybe T-2. The tumor is on the floor of his mouth at the base of his tongue. His dentist found it during a routine cleaning. What can I do to help him? Better yet, what shouldn't I do?

Please make suggestions. Thank you all.

Debbie C

Debbie,

The best thing my wife did for me was accompany me to all of my tests and appointments. Sometimes the results, medical details and future appointment dates come at you so fast, it helps to have a second person there to take notes. It's also nice to have someone to talk to on the drives back and forth and in the waiting rooms. Your presence alone should help him.

Dave,

Thank you.

Debbie

Debbie,

Here is what I did. It helped quite a bit.

Get a notebook, like Dave said, take lots of notes. Write down everything. If the doc is going too fast, ask him to slow down so you get everything. I taped all of the docs cards in the front cover of the notebook so I would have all their phone numbers in one place.

Don't be afraid of second opinions. They are good to have.

Push the docs for all test results. Don't let them tell you it will be a week or so.

We went through 2 months of that before we went to a different doctor and found out the results in 4 days.

Read the past posts here on the website. I found most of the weapons I have needed in this fight here on this website. These folks are incredible.

Mostly the best thing you can do is make the committment to see this thing through and stick to it. It will get more difficult to do as you move through the process. We are at the hardest it has been so far right now and I have struggled everyday with how to help my husband.

What I have found is that this battle will take the both of you together to weather.

And what Dave said was very important. Go to all of the doctor's appointments. Don't be afraid to ask questions. And don't forget to write down the answers.

Make a list of questions before you go. Sometimes they are pumping so much information into you that you will forget to ask that one question you really needed to know.

Take things one step at a time. There are going to be many things you will learn as you go and if you have any questions that you just can't find an answer to, ask it here.

You are likely to get many good answers.

I hope this helps a little.

Cindy

Cindy,

His doctor is talking about doing surgery in 2 weeks. This has been a whirlwind. My husband is retired but I still work full time. Thank God - I have a wonderful boss. I can have all the time off that I need. We saw him on Monday and go back for a CT on Easter Monday. The ENT said he will schedule surgery the following week. David, my husband is still in shock so I'm trying to do a rapid education. This site has already helped.

Thank you, I will follow both the recommendation Dave made and your suggestions. I've already started a notebook and have two pages of questions ready to ask.

Debbie

Debbie,

I am really sorry to hear the news of your husband. In many ways, your job will be the toughest. Cindy is just a step ahead of you and I am sure she can coach you along. The whirlwind you mention will not let up for a while. Are you buys going to a comprehensive cancer center? It is important to keep things moving but also worth finding the absolute best possible care as you may only get one chance at battling this beast. Don't feel you have to rush into something until you have confidence you are taking the best course possible. Know your options, arm yourself with knowledge. This site has about everything you need to know or a way to find it.

Wishing you the best.

Ed

Debbie,

I have to second what Ed said about making sure your husband gets to a major cancer center. This disease can become aggressive, and it typically needs to be attacked at the first opportunity using the best possible resources. You should not feel pressured to push ahead with surgery in two weeks -- it's more important to get the input of an experienced head and neck cancer team to help formulate the appropriate treatment plan and hopefully only have to fight this battle once.

Cathy

Hi Debbie,
Cindy did an awesome job answering your questions, good for you Cindy.
I think the best thing my husband did for me when I was diagnosed was to NOT treat me like I was sick. When asked what he did that was best for me that is what always comes to mind. I remember a few times after treatment that he very bluntly told me to stop acting like I was dying. Don't get me wrong, he wasn't being cruel, he was telling me what I needed to hear rather then baby me. He is like that to this day. As far as he is concerned I am cured and will never be bothered by cancer again.
I hope this helps.
Minnie

Hello Debbie,

I also second what Ed said about getting a second opinion at a MAJOR HEAD& NECK CANCER CENTER!!
You want a team of different doctors reviewing all his scans and tests to determine the best treatment for HIM! You want to throw everything at this the first time. Follow the sound advice about taking notes and writing your questions down ahead of time. You never remember them all at the appointment.
Please keep us posted and keep asking questions here. Someone always seems to have a similer experience during treatment. Knowledge will empower you to be his advocate and ask the right questions. Hope all goes well and you beat the beast to death the first go around.

Can someonre post the list of Major Cancer centers near North Carolina?

Danny Boy

Debbie, Try to take a deep breath every time this becomes overwhelming. You are in a new world now, filled with plenty of scary things and a vocabulary of "ten dollar" words. We will be here for your questions and generally to support you in this journey.

Take care