August 20, 2006 at 4:10 am #14340hopeforussoonMember
DEAR SANDRA B. I READ YOUR MAIL AND SORRY TO OF THE LOSS OF YOUR HUSBAND AS WELL MY DAVID DIED 1YEAR 7 MONTHS AGO AND FEEL THE SAME ABOUT THE FACT THAT THIS SOURCE OF INFO. IS HERE THE FACT THAT WE WILL HAVE THE CHANCE TO SEE OUR LOVED ONES ONCE AGAIN SHOULD BRING US COMFORT AND I BELIEVE YOU KNOW WHAT THAT MEANS. THE RESURRECTION HOPEJuly 7, 2006 at 6:30 pm #14339sandrabMember
Jules, most definitely your father can continue on. My purpose for joining this site is to help others with the knowledge that I’ve gained and to learn more. My husband would want that.
SandraJuly 4, 2006 at 7:55 am #14338julesParticipant
i am sorry to hear about your husband. However it sounds as though it is a great comfort to you that you were able to have 5 years together after diagnosis in which your husband was able to enjoy a reasonable quality of life.
We had a similar experience with surgery and it would appear that the story is all too common, hopefully through reading the experiences on this site patients will be empowered to seek second (and more) opinions. It must have been a lonely experience for you at the time with your husband suffering from such a rare cancer, this site has been a lifeline for me. Nobody else really understands.
I am sorry for your loss and I thank you for sharing your story, my dad has been diagnosed with a recurrance (in 1 lung and lymph nodes following a resection) and reading your story has given hope that he can live with this for some time yet.
JulesJuly 3, 2006 at 9:36 pm #14337marionsModerator
I am so sorry to hear about your husband. You are in our thoughts and prayers.
MarionSJuly 3, 2006 at 6:33 pm #168sandrabMember
Hello, my name is Sandra and I am so very happy that this forum has been founded. Five years ago my husband was diagnosed with cholangiocarcinoma and the internet resources were not nearly as robust. This forum is wonderful.
On resection and physicians, my husband was diagnosed at Mass General Hospital and the entire surgical team said that resection was not possible. At the time my husband was 52 years old and up until his diagnosis was an extremely healthy, fun-loving husband, father and grandfather. We simply would not accept the doctor’s pronouncement of eminent death in less than 8 weeks! My husband had a large malignant tumor in his right lobe….the left lobe was functioning well and compensating. My son got on the internet and found Dr. Rick Selby at the Univ. of Southern California who felt that the tumor was resectable and performed the 10 hour surgery…without a blood transfusion…because of our religious beliefs. The surgery was successful…my husband regained weight….with a very healthy appetite for both food and life. The 5 years gained were great. Two years after the surgery small tumors were identified in his lungs; however we opted not to use chemotherapy. My husband continued on until last year when he began to experience discomfort in his abdominal area….this progressed until October, 2005 when he nearly died of an infection in his abdominal area due to a perforated intestine and blocked duodenum. He never recovered from a 12 day hospital stay and finally passed away in February 2005. The cause of death was septis; cholangiocarcinoma. I have many questions about what happened and how it happened. For example, the doctors never confirmed that the cancer was back in the abdominal area. The focus was on infection.
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