My wife has just been diagnosed with oral cancer, after having moderate to severe dysplesia for the past 5 years. As yet we're not sure which type of cancer nor how bad...she has had CT scan, PET scan, and MRI is scheduled for tomorrow.

Being a non-smoker, non-drinker, she doesn't fit the profile (she is 56, btw) and is leaning towards the radiotherapy / chemotherapy option.

What do we look out for? What questions should we be asking?! We're both slightly dazed at present by the speed with which everything has happened and would appreciate info from anyone who has had a similar experience.

Thanks

Subby

Hello Subby

I'm sorry to hear your news and understand how confusing it can all be in those first days.

Your wife will need to be treated at a major centre where they can offer specialist doctors and dentists experienced in head and neck cancer. I was treated in Sydney but I believe Peter Macallum is an excellent centre.

Don't allow anyone to rush you into anything. Your wife is in charge and I found it very important for me to understand and evaluate everything before making major treatment decisions.

Take a notebook with questions, take notes and read as much on the internet as you can. This site is a wonderful source of info and describes all aspects of treatment in detail.

Best wishes to you and your wife. Please ask when you have questions, many members here will have valuable experience which can help you.

Love and best wishes to you both from Helen

Subby,
I am sorry you and your wife are faced with this, but you are in very good company here on this board. If you have questions that aren't answered by going back into the older posts, somebody here will always pop in and answer them for you. Also, at the top of every page is a search engine. Type in the word you are looking for, and you will get 200 old posts that have that word in them. Also the main site is a WEALTH of pertinent info on every aspect of this disease.
As to the questions you need to ask, be very specific. Talk to the docs and pick their brains.
Some questions I might ask are:
What treatments does this facility have to offer that will help us fight the cancer.
What treatment do you recommend for my wife's current situation?
What type of _____________ (fill in surgery/radiation/chemotherapy) will she be getting?
What's the normal recovery time for this treatment?
What are the expected side effects?
Is there a support group in the area that will help us get through this?
What about other medications, such as amifostine, reglan, Zofran, compazine, fentanyl will she need to help her through this?
I would also make sure your insurance is up to date, and find out what and to whom it pays. (HMO vs PPO) what's the co-pay? Find out if your Doc takes your insurance and vice versa.
Make out a durable power of attourney so you can continue to pay your wife's bills while she is in hospital. Make out a health care proxy so you can make decisions for her if she can't.
These are papers that you may never need, but it will ease your mind to have them done.
Then, when all your ducks are lined up, take some time out and enjoy each other, take a walk, see a movie, give some hugs. It is good for the stress!
You have a second chance at a new life! That's the good news. The bad news is it will take some work to get it. You can do it!!!!
Best wishes for you both, keep us posted!

Andrea

Dear Helen and Andrea,

Thanks a ton for your prompt and encouraging responses. Much appreciated and all suggestions noted.

It is really comforting to know that you are out there and willing to give us the benefit of your experiences.

Thankfully, we also have excellent facilities in Melbourne where my wife can get treated.

We shall post our progress here and hope that everything works out well.

Heartfelt thanks again.

Subhash

Hello Subhash

Something else I thought of.

Radiation isn't covered on private medical insurance in Australia unless you are an in-patient. I was very surprised to find this out - I was treated at the Mater Hospital in Sydney and had to pay the gap between medicare and the fee which was a few thousand dollars. Most patients have their radiation as out-patients.

If you attend a public hospital for radiation it will be totally covered by Medicare.

I don't know whether that will affect you but thought you would like to be fore-warned.

All the best to you and your wife, love from Helen

Thanks for the warning, Helen - very timely!

We'll try to make sure that we aren't out-of-pocket.

My wife joins me in thanking you again for your interest and advice

Regards

Subhash

Dear Subby,

Welcome to the Oral Cancer Foundation!! You will find more advice and support from many who have traveled the path ahead of you. It is the most informative websites on oral cancer on the web.
Use the search engine at the top of the page, it will give you valuable information as she starts her journey.
When you ask the doctors questions regarding surgery, radiation and chemo ask why the type they are recommending. There are different types of radiation as well as many different chemo drugs. I wish you all my best as you start this bumpy journey. Remember it will take time to heal. One rule of thumb is one week of recovery for each week of radiation. The radiation effects will continue for a few weeks after it ends. Many of us have traveled the path your on and survived and she can to!!

Best of Luck,
Danny Boy

hi stubby, hugs and prayers your way to you and your wife. we have all travelled this rugged path and survived, good luck along the way not easy but she will get there,.....take care ,.......best wishes maz