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My mom, 58 yrs. old, in January 98 began having itchy bumps on her hands and was jaundice. She went to endo. doctor who ordered a CT Scan due to her symptoms and after a phycial in the office. The CT showed an obstruction outside the common bile duct. She than had an ercp done and a stent was placed into the common bile duct to allow proper flow of bile. Endo dtr. told her to leave Florida and go to NY and get the best pancreatic specialist because he felt it was probrably PC. She went to the chief of surgery at Westchester Medical Center and had a different type of CT Scan done. Dr. Delgurcio said she had a tumor about the size of his thumb and felt it was caught early. She was admitted to the hospital for pre-op stuff. We were planning on her having the whipple procedure. Her past history includes hysterectomy, gall bladder removal, mild diabetic on insulin shots, heart attack at 52 yrs. old, fluctuation of weight 20-30lbs, smoker- about a pack 1/2 day, heavy coffee drinker. Dr. Delgurcio performed exploratory surgery 1/98. Took 13 tissue samples, told us benign tumor. He called Florida lab and ercp scrapings were also negative. He said whipple was only to be done if it were cancer and even so the tumor was in a place that could not be removed. We were shocked But relieved!! During the next 5 months she had a big weight loss and a lot of pain. We were told it was pancreatintus. She had a nerve block done but didn't help too much. In Aug.98 she got reflux and was not digesting food. Dr. Delgurcio says schedules rerouting of intestines to help with food digestion. During the 5 months she had an ercp done every 5-6 weeks to replace stent, all brushings were negative. Dr. Delgurcio came out from surgery and informed us that mom had PC, with liver mets and abodominal lining mets. He felt she had about a year. An oncologist was called in. One that I absolutely have no respect for but that is another story. My mom began getting Gemzar once a week. She continued to have the stent replaced until the duodem was blocking passage than she had a tube put in from the outside. She also had a morphine pain box inserted that was refilled every 5 weeks. That was a blessing. She was hospitalized many times during the next 8 months. One for being toxic, a few for dehydration. She had terrible ademia. She had surgery to put in filters for blood clots. Her blood pressure was usually low-normal but it did flucuate at times. She didn't need much insulin during this time as her sugar was low. Her tempature was also usually a low-grade normal. During the course of Gemzar she had a terrible quality of life. Always felt she had the flu, sweats, weakness, naseau, headached. Very low platelets the whole time. In April 99 things took a turn for the worse. She was hospitalized for three weks for being toxic. She was on heavy antibiotics and was really getting weak. She was released and sent home on drips for the antibiotics. She wanted out of the hospital. She was home maybe 10 days with hospice and than went into a hospice hospital. Her condition rapidly got worse. She was receiving morpine by drip and went into a semi coma for about5 days. She died on May 5. My mom fought until the end. She couldn't and didn't want to accept what was happening. I am sure this was out of fear and anger but the main reason was because she had an oncologist who never leveled with her. This Dr. Chun never told her the truth about her condition. He gave her false hope and she never got her affairs in order and she never understood her condition. She put all her trust into this person. He gave her kemo after Calvary was called and after he knew hospice was called in. He even went as far as telling her if she was stronger in a few weeks she could get kemo at Calvary. His answer to me was he felt she wouldn't go if he didn't tell her. So in other words he lied. He would not give us a letter for the S.S. office saying she had less than 6 months to live. This person put the responsibility on the patients family and she felt that we were lying to her. It was horrible. I live 1200 miles away and went to NY 13 times since August 1st. to take care of my mom. My dad is 78 years old and needed help. My sister who also lives in Florida and who has a son with Ewing Sarcoma went to NY 6 times. We left behind my three small children and her two children as well as our husbands. We did it out of love for our mom and we feel that if this doctor was not truthful with her and she based her decisions on the information this doctor gave her. If she knew what he had told us and what every one around her knew I really think she would have made different choices and had a much better quality of life. My mom died a horrible death and she died angry. I believe it is a doctors oath to do no harm. I believe a patient should be told the truth about his or her condition and given all the options and be put in a position to make an well informed decision. I don't know what mistakes, if any, were made in this case but the reaction I get from every single person I talk to is that she was misdiagnosed. I think we had a good surgeon from the beginning. Maybe pathology made a mistake and didn't catch it during the first surgery. Maybe it was a tumor that was benign and turned cancerous. I really don't know.

Posted 06/08/1999 10:52 pm by adele
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