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LINDA C


photo Hello, my name is Linda, I live in NY. I have been so fortunate in my life to be blessed with a wonderful family. My mom and my daughter Kelly, my best friends in the whole world, a terrific son in law, and two beautiful grandsons. I lost my husband of 35 years, the love of my life since I was sixteen July 1, 2000, which made this journey more difficult than ever.

I was 54 years old when diagnosed. I had three episodes of epigastric pain. the first was in 2001 lasting 8 hours and severe. I didn't seek medical attention, it passed and didn't have another until February 2003, it went on for hours, still I didn't seek help. The last one in March lasted 35 hours and I saw my doctor that morning. After a normal EKG, I was thought to have acid reflux and was given previcid. I was sent for an upper GI, it was normal. I was told to just keep taking my previcid, I may never know what caused this pain. I demanded more tests, I knew there was something very wrong. Ultrasound found my 8cm tumor in the body-tail of my pancreas. CT confirmed it. It was thought to be some kind of mucinous cystic neoplasm. My local surgeon sent me to Roswell Park Cancer Institute in Buffalo NY, 45 miles from my home. This surgeon told me that I needed the surgery, that the tumor was sitting on a vein, and if I didn't act quickly it would be too late, that even if it was benign it would kill me. I wasn't comfortable there, I went back twice with my questions of what could happen to me and twice I couldn't say yes because I was too afraid.

My daughter wanted so badly for me to have the surgery that would save my life. For every reason she would say I needed to have it, I would have more reasons against it. She was the one who introduced me to the message board. She had started posting back in April 2003, trying to get information from people who had been through it. Then I started posting myself. Some of what I read was so frightening to me that I decided not to go through with the surgery.

My daughter was devastated that I would make such a choice and what it would ultimately mean for my future. One day I would I would get my nerve up, the next day I changed my mind. This went on for six months. At this time my poor mom was in such a state because of my indecisions she had to be put on blood pressure medication.

My daughter consulted a doctor friend out of desperation to advise her of what she should do. He suggested she give me some time and stop arguing with me. He said I needed to go through the steps, sort of like grieving. First the shock, then fear, depression, and finally realization. She said it was the saddest thing she ever had to do, sit back and watch her own mother go though every phase exactly like the doctor said. Suddenly, I was ready to move forward. I owe a huge apology to my entire family for what I put them through, especially Kelly who stood beside me every step of the way and wouldn't give up on me. She saved my life. I love her more than words can say.

I learned from the board it was of utmost importance to find an experienced pancreatic surgeon. I heard Dr. Yeo's name over and over. I decided while I was doing nothing, I would send him my scans. He convinced me I needed to have the surgery and he would be glad to perform it for me if I could come to John Hopkins. I decided if I could have the best, I would go for it.

I had my GP send all my reports to my insurance hoping they would allow me to go out of network. They approved me for counceltation and testing which I did, but denied me to have my surgery there. They sent a list of qualified surgeons in my area. They sent that same list to Dr. Yeo. He knew Dr. Steven Ahrendt. He had worked with him at John Hopkins and said to let him do the surgery, I would be in good hands.

I had my distal pancreatectomy and splenectomy at Strong Memorial Hospital NY October 7, 2003. My tumor was malignant. It was a very rare form of pancreatic cancer, a slower growing type. It was mucinous cystadenocarcinoma. I had clear margins and no lymphnode involvement. Because slow growing types don't respond well to treatments, they were not recommended for me.

My surgery was with out complication. I returned to work in my home beauty shop 5 1/2 weeks post op. I had my first clean scan in April and will continue to have them every six months.

This surgery was not as difficult as I had feared.

June 26, 2006
Still doing well, stronger than ever!




Posted 08/14/2004 07:37 pm by LINDA C
E-mail Address: liclark@usadatanet.net

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