What is it like after Whipple surgery plus 1 1/2 years?

Thank you so much for your story. I have a pancreatic neuroendocrine tumor. I had a endoscopy EUS ultrasound done recently. The biopsy came back positive for a stage 1 cancer. I am going for a PET scan on 11 Aug. I have been reading on line a lot. I am very scared that since the tumor is malignant that I might have to have a Whipple. Your story gave me hope. Thank you so much for sharing. I am so sorry to hear about the loss of your husband. I am praying for you.

Jump to this post

Wow, I can't believe it has taken me this long to look online about pancreatic cancer and the Whipple. I had my Whipple 02/06/2014. Over 9 years post whipple, I am considered cured. Cured is not a word used by any of the doctors you will meet during this journey and mine even told me that I would NEVER be cured, the best we could hope for was remission. Well, who said you can't do anything if you set your mind to it and trust in God. OK, so my story is that my husband and I had just moved into a new home October 2013. I was expecting my first grandchildren, twins, on 1/9/2014. My focus was the holidays and the babies! I was not feeling well. I was itching all over my whole body, my eyes, inbetween my toes, you name it. Unbearable, but I pushed on. I emptied all the moving boxes, I got through Thanksgiving and then Christmas and then I just felt so horrible I started to feel like nothing would change. I met my new babies and immediately went to my Primary Care Physcian and he said, this doesnt sound right. He didnt just throw Benedryl at me and say deal with it...no he ordered blood tests and a CT Scan. He called me after the CT and told me that there was a mass on my pancreas and that it was blocking my bile duct. This is why I had such intense itching. Thank the Lord for the itching, which saved my life. Most have no symptoms. He scheduled a biopsy and a process to put a stent in to release the bile and stop the itching. I was literally ripping my skin off all day and night. It was horrible. I went in to have the procedure on 1/21/2014 and on 1/27/2014 I met with a man who to this day I have never spoken to again. He was I believe an oncologist type, but I will never forget what he said to me. My husband and I were sitting in front of him, like in the movies, and he said, "Well you know you have Cancer right? It is stage 3 and you have about 4 months to live. I recommend surgery immediately" I was in shock. What is happening, but mainly I got mad! We left and I called my doctor and he advised me to meet with a surgeon who turned out to be one of the most important people in my life. I was 54 years old and she said, Mrs. XXXXX, you will live a long life and see those babies grow. I didn't know any better than to believe her, because honestly, I didn't look online at ANYTHING. My husband did, but didn't share at my request. I didn't look online because she asked me not to. I was scheduled for 2/6/2014 for my Whipple. My process was very very fast. The weekend before surgery, I wrote letters to my 4 adult children and my husband. I put my affairs in order and I had surgery. As anyone knows after this surgery, you can't remember everything, but I was in the ICU for 12 days. On day 7, my surgeon came in and told me that the cancer had spread to my lymph nodes. She had removed 23 and 3 had shown cancer, so I would need 6 months of chemo. I had nothing by mouth for 9 days and I was told it would be months before I could return to work. I got through the surgery and when I went home, I had the tubes coming out of my stomach and pancreas. I was a size 00 when I left. I had nothing through the surgical implanted feeding tube while in the hospital. Many may not want to hear this, but my faith and my constant connection with Christ during this process was my saving grace. I was smiling and optimistic. I returned to work post whipple after 7 weeks. I started chemo 3 days later on 4/1/14. I am not trying to talk myself up at all, I just want to give strength and encouragement to those who are facing this horrible diagnosis. I now have 5 grandchildren. The twins are 9, I also have two 8 year old and one 5 year old grandson. My husband committed suicide 1/15/22, 1 day before out 40th wedding anniversary, so I guess I am here for a reason. Not sure exactly what that is yet. I have talked to many with cancer about being positive and not giving up, but when I lost my husband, I wasn't sure what to think anymore. Anyway, I am so thankful to be alive and pray for anyone going through this very intense life journey.

Jump to this post

Thank you for sharing. My Whipple was 4/24/2023 (the day before my birthday). It was the best birthday present I could’ve asked for. The week in the hospital was hard. The second week at home was harder and the third week was the hardest of all because of the withdrawal symptoms from the opioids. Once I could start walking on a regular basis, things started to improve drastically. Unfortunately, I really struggle digesting animal fat. Everything else seems to be fine. I agree with you that the new digestive and elimination protocol is very different and it’s always good to travel with extra clothes in the car. I was treated at Johns Hopkins hospital and they gave me nine rounds of FOLFIRINOX prior to the Whipple surgery and I’m finishing my final Chemotherapy today. We had to take a break for a few weeks because my white blood cells were too low to treat. I agree with you that your mental state is extremely important. For me, when I was diagnosed, I decided that I would control what I could control, and I would prepare for the worst in the best possible way. I knew it would be hard for my family and in retrospect I believe it was harder for them than it was for me. I could not have done it without my care team, which mainly consisted of my wife and my scientist cousin who would call me four times a week to discuss all the minutia and details of the drugs, bloodwork and treatment protocols. It was a conversation. I looked forward to every day. Best to you all as we go down this often lonely road.

Jump to this post

Thank you for sharing. My Whipple was 4/24/2023 (the day before my birthday). It was the best birthday present I could’ve asked for. The week in the hospital was hard. The second week at home was harder and the third week was the hardest of all because of the withdrawal symptoms from the opioids. Once I could start walking on a regular basis, things started to improve drastically. Unfortunately, I really struggle digesting animal fat. Everything else seems to be fine. I agree with you that the new digestive and elimination protocol is very different and it’s always good to travel with extra clothes in the car. I was treated at Johns Hopkins hospital and they gave me nine rounds of FOLFIRINOX prior to the Whipple surgery and I’m finishing my final Chemotherapy today. We had to take a break for a few weeks because my white blood cells were too low to treat. I agree with you that your mental state is extremely important. For me, when I was diagnosed, I decided that I would control what I could control, and I would prepare for the worst in the best possible way. I knew it would be hard for my family and in retrospect I believe it was harder for them than it was for me. I could not have done it without my care team, which mainly consisted of my wife and my scientist cousin who would call me four times a week to discuss all the minutia and details of the drugs, bloodwork and treatment protocols. It was a conversation. I looked forward to every day. Best to you all as we go down this often lonely road.

Jump to this post