My mom was just diagnosed with oral cancer this week. I am going with her to see the oral surgeon on Friday. I wanted to ask people for what questions we should ask at her visit. This is all new to me as I have never known anyone that has had cancer before and I really have no idea what to do or where to start. Thank you.

Hi Dee - Welcome to this great site! It's so good that you are going with your Mom to her appointment with the oral surgeon. Has your Mom already had a biopsy or is that what she is going for on Friday? For more information, you could start by going the the main page of the Oral Cancer Foundation at:
http://oralcancerfoundation.org/ On the left side of the page, there are various topics to explore like diagnosis, treatment, oral cancer facts which may help you decide what type of questions you or or Mom might want answers to. You could make a list and bring it with you. Whatever questions you have, you can also ask here and someone will get back to you This is the best place to be to get all of the best and latest information on all types of oral cancer and from the most compassionate people who've been there and can share their experiences with you. If you want to look up some of the best cancer hospitals, go here:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/

Let us know how the appointment goes on Friday.

Good advice from Anne-Marie and good luck to your mom. You can learn a lot here DeeHH

Thank you Anne-Marie and EzJim. My mom actually had the biopsy about a week and a half ago, and when she went to get her stiches out this Tuesday is when the doctor told her it was cancer. All she knows right now is that they are going to have to remove the cancer including some of the bone. The doctor who will be doing that surgery is who we will be meeting with on Friday. My mom is almost 80 so I know "quality" of life would be much more important to her at this point in time than "quantity" of life. I am just praying they caught it early so that she at least has the 5 year chance of survival rate that I keep reading about online.

My thoughts are with you both, Dee. Please keep up posted.

Welcome to OCF Dee!

You are in the right place to get help for your mother. Its important for you to attend all her appointments with her. Take a tape recorder and ask the doc if they mind you recording it so you can go back and play it later. Seems like we hear bad news and our minds click off and dont hear anything else. This is why its important to write down your questions and the answers the doctor gives.

Ask exactly how much of the bone he will be taking and to show you exactly where the bad area is. Ask about how long she will be in the hospital and if she will be in ICU or the burn unit. Ive had my lower jaw removed in a 10 hour operation, that surgery is called a mandibulectomy. It is not an easy operation to bounce back from. Recovery can take a long time, months maybe even a year or more. Im now 18 months post surgery and Im doing great! It took me a long time to be ok, I was kept in a medically induced coma after the surgery for 3 weeks. So you may want to ask her doc if that will be happening with your mother. Another good question would be if the doc is planning on using anything to replace the bone such as a piece of metal, a piece of leg bone or even a cadaver bone. Find out if she will be given a feeding tube while she is having this surgery. Ask if they think she will need further surgeries for reconstruction down the road. My doc made me wait a full year before I was allowed any other surgeries. It takes that long to heal from a major operation like this one. Of course we are all different and will recover at our own pace as well as react in our own way to procedures and medications.

Im hoping the above info and questions does not scare you. Im giving you info so you can be an informed caregiver and advocate for your mother. Please let me know if you have any questions I can help you with. Best wishes tomorrow!

Ask , ask, ask. Oh how I wish I would have asked a lot of questions before those rad implants. I actually wonder if this procedure did anything beside mess up my mouth and what tongue I have left. Where they had my legs strapped down is a mess from where the straps were on my legs down hurt, burn and have turned them to a nasty looking purple color too. They look too bad to wear shorts in the summer. Ask questions no matter how trivial they seem to you now. Good luck and the best to your mother.

Hi Dee

The tape recorder is a great idea, but I also found a notebook handy. It allowed me to write appointments down as there were so many, I couldn't keep track. I also had a page for important phone numbers (nutritionist, social worker, welfare agency, primary physician, his mother, etc). It also allowed me to write down instructions received by phone and things to ask the doctor at the next appointment.

Also, if the doctor says something you just don't understand, you can hand the book over and ask THEM to write it down for you. I have a brilliant diagram of how Alex's treatment was to go which was drawn by our oncologist.

The other advantage of a book is that you can slot in any bits of paper you receive. This might be appointment cards, notes on diet, notes on side effects of treatment etc.

Every clinic has booklets written specifically for patients and their carers which will explain a lot of what is going on in plain English. Look for them in waiting rooms and ask your doctor for them.

Alex and I found a book called 100 questions and answers about head and neck cancer by Kenneth Hu and Elise Carpa (?sp) which was fantastic! It was written by patients who had already been through the treatment and edited by healthcare professionals. A fabulous investment and really cheap to buy. If you go ahead and buy it, you can go through Amazon books and OCF gets a donation. Just look to the top of the screen when you are in the Forum and you will see that you can click on the Amazon button to order the book through them.

Good luck

Karen

It really is a good idea to keep records. What I did was put everything on a spread sheet on my laptop with all the doctors' names, phone numbers, money paid or still owed, prescriptions, medications and when given or due to be given. I made a copy to post on my son's refrigerator so he would be aware of medications due to be taken when I was not there. I also put in names of office personnel, or people I talked to and when, so that I could mention them when I talked with someone different. I helps to know the office assistants by name - they can be very helpful when you need them to change or move up an appointment or get info from the doctor. Keeping records is not only good for the patient, but I found that in my case, it kept me busy so I didn't have as much time to stress over what was happening to my son and it made me feel like I was making a difference in helping him to survive. Let us know how things go with your Mom.

oh yes, what Anne Marie says. As much as you think you will never forget - you do. And there may be times in the future when you have to use the information to slap your insurance, and welfare agencies around. We were treated like malingerers by the people who control funds for sickness benefits (government and insurers) until I gave them the list of doctors, treatment regimens, expected and actual side effects, dates of admission and medications that Alex was on.

After being treated like dirt by the govt agencies especially, I received a very nice letter from the manager of some call centre person who treated us particularly badly. The letter reversed the instructions to present to the agency and fill out the same forms every 3 months even though we had a medical certificate good for 6 months. We were on the books and would stay there whilst we kept producing certificates to say Alex was unable to work. I am certain this is because the weight of the catastrophe that had befallen Alex was clearly evident by the 2 page list which described Alex's very unhappy year(and maybe we were lucky and possibly struck a manager who had experienced cancer in their own world).

On a side note, it has also helped to speed up Alex's court date for his property settlement with his ex-wife who has been delaying and procrastinating for the past 5 years. We got a federal court date rather than family court due to his illness and urgent need to disentangle himself from the witch. My vindictive side also hopes the court sees her for what she is and that she also has the good grace to feel just a little bit guilty although I doubt it.