Welcome to the Oral Cancer Foundation message board. If you have any concerns about head and neck cancers -- whether you're worried about a spot in your mouth, or a family member or friend is about to begin treatment, or you're done with treatment and are wondering about specific after-effects -- you're in the right place to get answers. From people who have just had their first doctors' appointments to survivors of a decade or more (and the family members and friends who are supporting them), everyone here will hold your hand and guide your way.
IF YOU'RE LOOKING FOR INFORMATION....
The Oral Cancer Foundation has three search engines. One searches the main OCF web site of content, one searches only the OCF news articles (1000's) and one searches the patient forum for post topics and key words. The search engines are located in these individual OCF sites, but you can find them all on this one page http://www.oralcancerfoundation.org/search.htm
The "search" link at the top of each message-board page, in the center, goes to a search engine just for for the message boards ONLY. Type the term you want to search for in the blank area. You can search a specific forum; for maximum results, choose "Search All Open Forums." (And make sure you are spelling your search words correctly.
The main OCF site has its own search engine, and the information on that part of the site is vetted through the OCF science advisory board, and is very current.
There are 10 things that you need to consider if you, a loved one, or a friend are about to enter treatment:
No. 1: Be an active partner in the medical decisions that are made about your life.
Donít be passive. Learn about your disease, and participate in the decisions that are madeÖ.For example with my lymphoma, if I would have accepted the first treatment offered, Iíd be dead today. It was assumed that I only had a mass in my chest. I later learned that the lymphoma was all through my body.
No. 2: Seek and know the truth about your illness, and prognosis.
If you donít have the facts, and donít know the truth, you wonít make good decisions. It takes courage to ask questions about statistics and your prognosis.
No. 3: Get a second opinion.
We wouldnít buy the first computer or cellphone we looked at. Shop around when your life is at stakeÖ.I got second opinions on all of my cancers.
No. 4: Determine upfront how broad or narrow your physiciansí experience is.
If you have something that your doctor says, ďIíve never seen this before,Ē get another doctor. You want your doctor to be very familiar with your disease.
No. 5: If you have a poor prognosis, or a rare form of cancer, try to get to a center of excellence.
If your doctor doesnít believe he or she can cure you, you wonít believe youíll be cured.
No. 6: Do not allow your caregivers to project their values, goals and expectations onto you.
In my book I tell the story of a 68-year-old man who was diagnosed with PCa (prostate cancer). And this man is in very good health other than the PCa. His 35-year-old doctor reasoned that since his life expectancy was only five or six years, that he recommended that the man do nothing for his PCa and told him it would take the PCa four or five years to kill him. This man wanted to live to be 80 or 85. He didnít accept that. He had his prostate removed, and many years later heís in good health, and probably will live to be 80 or 85. Donít let your doctor project his or her expectations in life out on you.
No. 7: Understand the economics of cancer care.
You donít want to be in a situation where your doctor wants to run a $150 test that your insurance doesnít cover, but it contains critical information for making your diagnosis or deciding treatment. You need to understand what your insurance covers, and let your doctor know what youíre willing to do to supplement that coverage to get a good diagnosis, and the best possible treatment. If your doctor says that he wants to run another test, but insurance wonít pay for it, find out what it is. Why does he want to run it? Find out the cost, and determine whether you should pay it yourself. It might save your life.
No. 8: Ultimately, find a doctor that you trust and believe in.
Find a doctor with a fighting spirit, and who thinks that they can cure you. You tend to find doctors that reflect your own attitude. I always found doctors that liked the fact I was aggressive and going to fight for my life. They didnít object to my asking a lot of questions.
No. 9: Treat your mind as well as your body.
Just because we canít quantify, and donít understand the power of the mind, to deal with disease, it doesnít mean that attitude and the will to live is not a powerful, powerful force in the course of an illness.
No. 10: Your attitude and beliefs are your most powerful weapon against cancer.
I believe that deeply. There have been studies that show when you are happy and engaged and positive, your immune system is at its strongest. When you are depressed or unhappy, your immune system is weakened.