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

Deb,

Before running off to surgery, talk to more than one doctor. The current protocol is for radiation and chemotherapy before cutting. Our ENT gave us an extensive education on the numbers and survival rates and it makes sense. At least take the time to look into it before you submit to the knife.

Follow the advice of going to a MAJOR CANCER CENTER!!!

I say this very strongly because there is an enormous difference between doctors who come across cancer occasionally and those who spend their lives in the thick of it. Explore every option. While these cancers are rapid growing they are also very treatable. Double edged sword if you will.

The most important role you play in this is to always remember that the patient has selective hearing. You cannot. Listen, hear, learn. Do everything you can to know as much as you can. Nothing hurts a caregiver worse than knowing their own ignorance allowed their loved one to suffer unnecessary pains.

Some doctors are surgeons first and practitioners second which basically means they make their money and reputation cutting people open. I do not say this as a negative comment just so you can understand that every doctor has an approach that works for them and you have to find the doctor whose approach works best for your husband.

I had to threaten my husband with divorce just to get him to get a second opinion. Now he tells everyone we know how I saved his life. I would never call it that but it was just necessary to make sure that we knew what we were dealing with and how to deal with it and then to make sure that we weren't in such a panic and hurry that we rushed into a treatment that wasn't ideal for him.

This road is long and hard. I hear that it gets better and I hope they are right. Where we are now is devestating to both of us. But the survivors here keep reminding me that there is sunshine on the horizon. Every morning I wake and I look for it. Haven't seen it yet but I am still hoping.

Remember that even those who seem to have all of the answers still ask questions.

Keep your chin up. Stay strong. Walk briskly but don't run or you might pass something important on the way.

As I was told when I arrived here.... Welcome to the club that no one ever wants to join. Yet we are all forever grateful we are here.

Cindy

Deb, welcome to the site. Sorry you had to find us. One of the most important things my wife did for me during the first part of our cancer journey was she did all of the research on this disease. I was not interested in finding out what was going to happen and then anticipating all of the pain, loss of function, different outcomes, etc. I knew I could deal with whatever happened as it came up, but I didn't want to have to anticipate what was going to happen for days, weeks, months. I didn't start reading this forum until my tonsilectomy, rad/chemo treatments were over and all I had to anticipate was the radical neck dissection to remove the lymph nodes. I knew what surgery was all about so I wasn't disturbed about what I would learn if I read about it on this forum.

The above applies to the early part of this trip. During treatment, she tolerated my bad humor, helped me in any way she could, smacked me when I needed it, and kept me on the course. One year later and I look back on the treatment aspects of this disease and already the memories of the discomfort are fading and our life has been much enriched by fighting this disease together and, so far, winning the battle.

So hang in there, it is a difficult ride, but one you can both get through. It is extremely important to be treated at a comprehensive cancer center as they have weapons non-specialists haven't even heard of yet. So please go to a major cancer center. I traveled 60 miles one way every day for 7 weeks to get my rad done at a major cancer center, so it can be done and the outcome is a much higher probability of success where the experts are. God bless.

Hello Deb; The support of my husband through my battle with cancer has been the glue which has held me together. Because he is so committed to my recovery, how can I be any less committed? On certain days it made the impossible- possible.
We are still in the middle of the fight with my first recurrence coming hard on the heels of radiation, which was very discouraging.
Go to all his appts and listen hard...you will likely hear better than he does.It is such a gift to have that balanced view with other interpretations of conversations with docs or treatment providers.
I can sense your resolve just by the fact that you are on this board asking questions.Bravo!! There is a lot of good advice available around here. I've taken advantage of a lot of it.
May you also feel supported as you undertake this important and difficult journey with your husband.
All the best, Fran

Debbie,
I'm not certain that Cindy is correct that 'the current protocol is radiation first and surgery second'. It is a question to discuss with the doctor, but I think most of the people on this board have had had surgery first and rad second. It probably also depends on stage, size, and location. If they need to shrink the tumor before surgey, then they will do the rad and chemo first. I'm not medical, but I didn't want you to take Cindy's statement as gospel. I for one wanted surgery ASAP. I wanted it out of my body. T too reiteratate the importance of being at a major cancer center. It's a rough road, but the tow of you can do it.

Take care,
Eileen

Here's a link to the North Carolina page of the NCI's Cancer Center list:(It looks like a Final Four List, Duke, UNC, Wake Forest )

http://www3.cancer.gov/cancercenters/centerslist.html#L20

I too would encourage treatment at one of these centers. The team approach means that all of your caregivers are on the same page, and frequently relieves you of the burden of trying to coordinate information between them. Typically, a tumor board consisting of all the participants in your care will meet to discuss and agree on a course of treatment. Before I was seen at the University of Chicago, I felt that I was trying to do the coordination. I could barely think rationally at the time, so the team approach of the Comprehensive Cancer Center saved my sanity...if not my life.

The one thing I haven't seen brought up here yet is the great job done by your dentist. Fiinding the cancer early gives you the best chance of getting it all the first time with the minimally invasive treatment. He is to be commended. If only there were more like him.

Keep doing what you're doing. Be your husband's advocate. Come here with your unanswered questions.

Good Health,

Chuck

Debbie,

I'm sorry to hear of your husband's diagnosis. You've received some excellent advice from the board. My experience has been that the more and better informed I am, the better the treatment I receive from doctors. I would suggest that you spend time exploring the OCF website beyond the Patients/Survivor Forum. There is a wealth of information here plus links to a number of very useful sites. Also, scan the news section for information on the latest developments in treatments. Go to each doctor's appointment with a list of questions based on your research and advice from this board. If a doctor is unwilling to answer your questions, find one who will.

Again, the importance of going to a comprehensive cancer center cannot be overemphasized. I had to drive 4 hours to Boston for a second opinion and ended up living there for the 7 weeks of my radiation treatment. It was a minor inconvenience in retrospect.

Treatment is a bumpy ride but you want to be confident in your doctors and the knowledge that you've done everything possible do to get the best treatment and care. Best, Sheldon

Debbie

My husband also had a base of tongue cancer that was diagnosed at the dentist's office. It is almost 2 years since his first surgery. I echo the advise given here. Be sure you are seen at a major cancer center...maybe even two of them. Second opinions are only going to help. Get as much information as you can. Knowledge is power. This site and its links are the best sources of information I could find. And lastly hit it with all the treatment they suggest. I still feel if Jack's oncologists had included chemotherapy the first time around, he wouldn't have needed it the third time.

Be sure to take care of yourself. This is a rough one on caregivers as well as patients. The advise on this site has kept me sane.

Keep us updated as he gets into treatment.

Lowanne

Debbie,
Should radiation be part of your husband's treatment, be sure to have him see his dentist before the treatments start and make sure that his teeth are in good shape. Radiation is very tough on teeth and some preventive maintenance beforehand could save some or all of them. Good luck. - Sheldon

Hey Deb, my heart goes out to your and your husband. I know for me, my wife played a huge role in helping me get through two rounds of treatments. She was a bulldog in helping me deal with doctors, always asking questions and just generally carrying the load when things got too overwhelming for me... You have a tough role but a very important one...

Where in North Carolina are you from? My wife and I just moved back to NC from Arizona in October. We're living in the Raleigh area. E-mail me if you ever have questions, want to talk, vent, etc.