Patient Stories
Age: 47
Diagnosis: Cholangiocarcinoma
In your own words, what do you wish you were told the day you found out about your diagnosis?
I wish I was told that there are examples of people just like me who have beaten the odds the day I was diagnosed with cholangiocarcinoma.
I specifically wanted to know the best resources available, places to go and the best five doctors and hospitals in the country to treat me. I needed the numbers and contact information.
What has been most helpful to you during your cancer journey?
My medical oncologist and her team have provided us the most guidance. Prior to meeting with my current oncologist, the oncologist wanted to work in their own silo. My current oncologist is unique because she is caring and is willing to pursue solutions from throughout the industry.
Do you have any advice you would like to offer to other who are diagnosed with your type of cancer?
It has been 7 months since I was diagnosed with cancer. I look forward to providing more specifics on this information years from now. Until then, the short answer is daily research for the best resources- doctors, drugs, trials.
Age: 53 (was 46 when diagnosed)
Diagnosis: Intrahepatic Cholangiocarcinoma
In your own words, what do you wish you were told the day you found out about your diagnosis?
I think everyone that has been told they have cancer experiences different reactions. Their life is forever changed at that moment. But for me, I was never angry or resentful I got cancer. I never asked “why me?” Attitude and patience are very important in coping with cancer. The thought of dying never entered my mind. I was prepared for a long journey. I remained positive and approached cancer as just another challenge in my life. But I was not going to let it defeat me. And now in time, I’ve come to fully accept it as a part of my life.
What has been most helpful to you during your cancer journey?
For me it has been what I call the 3-F’s: Family, Friends, and Faith. And to me they are all connected. My family was with me my entire journey, and through their care and love, helped me through my toughest times. My friends were there for me, and just knowing that I could always turn to them gave me the extra strength I needed during my journey. My faith is in God, and in knowing He is in control of everything, helped me during my times of fear.
Do you have any advice you would like to offer to others who are diagnosed with your type of cancer?
To never give up hope. With hope, there is always a tomorrow, always a future. With hope, today’s dreams can become tomorrow’s realities. As a cancer survivor, I never give up hope.
Age: 69
Diagnosis: Cholangiocarcinoma
In your own words, what do you wish you were told the day you found out about your diagnosis?
I was pleased with what I was told --- there was a good change that my cancer might be eradicated, or at least controlled, through selective chemotherapy.
What has been most helpful to you during your cancer journey?
First of all, the unquestionable support of my family, especially my wife, Linda, who is my primary care giver.
Do you have any advice you would like to offer to other who are diagnosed with your type of cancer?
Keep a positive attitude, you are in God’s hands, and he gives all of us just one day at a time.
Diagnosis: Cholangiocarcinoma
In your own words, what do you wish you were told the day you found out about your diagnosis?
That it could be fixed. I also wish I had been sent to a Cancer Center sooner rather than later.
What has been most helpful to you during your cancer journey?
My current doctor- She gave me hope. The staff at my Cancer Center has also been wonderful, very caring and compassionate.
Do you have any advice you would like to offer to others who are diagnosed with your type of cancer?
The treatment is doable. There is hope. Be optimistic, love faith, be cheerful (even when it is difficult) and continue on with your life.
Age: 57 .aspx?width=200&height=266)
Diagnosis: Liver Cancer
In your own words, what do you wish you were told the day you found out about your diagnosis?
I wish that my doctor would have told me to come into his office. He told me on the phone New Year’s Eve 2008 at 3:30. At least if my doctor had told me in his office I could have asked questions if I wanted to. I wish they had told me there was a problem and that I needed to come in soon.
What has been most helpful to you during your cancer journey?
My Doctor, the staff and my Partner. Scott, my Doctor, my God, and my faith have all really helped. Without God and my faith I would not be here today. My doctor prescribed medication which really worked and it has been helpful having Scott with me both at the clinic and at home.
Do you have any advice you would like to offer to others who are diagnosed with your type of cancer?
Stay in touch with God, do what your doctor has to say, and take your medication. If you had a doctor like I had it will be easy to follow directions and you will feel like they are part of your family. You will feel like the doctor really cares about your feelings and that maybe you can live longer than the 8-months which they gave you. I was diagnosed in ’08 and in March the tumor was 12 cm, in May it was 8 cm. I was diagnosed 28 months ago and I am still going.
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Age: 66 years
Diagnosis: Hepatocellular Carcinoma in October of 2004
Things that I wish I had been told on that first day by the specialist in Tulsa, OK?
I wish that I had been referred to a large cancer center and I wish I was told that even liver cancer doesn't always mean a death sentence.
Also, I would have liked to be put in touch with other liver cancer survivors.
What has been most helpful to you during your cancer journey?
My faith, my friends and family, a wonderful lady named Sherrill, and last but certainly not least, my medical family.
Do you have any advice you would like to offer to other who are diagnosed with your type of cancer?
Don't ever accept the first opinion out of the box--always be willing to go wherever necessary to seek out the very best medical expertise available. Examine your own priorities and make certain that you are absolutely ok with the path you choose. This is particularly true in matters of family, friends, faith, and outlook.
Stay as active as possible---even on days when you don't feel good and lying around would be the easiest thing to do. Use it or lose it!
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Age: 65
Diagnosis: Cholangiocarcinoma
What has been most helpful to you during your cancer journey?
I would most definitely say my family and friends and having a strong support system.
Do you have any advice you would like to offer to others who are diagnosed with your type of cancer?
I would not only encourage others with the same type of cancer, but of all cancer patients to first remain positive and pray to a higher being for strength. Also, listen to your physicians and follow all advice given and never give up!
Listen to Carol's story of being diagnosed with and surviving cholangiocarcinoma:
Last Updated on 2/10/2012 11:23:50 AM