CancerCompass message board discussion started by julie2 on 1/4/2008 http://www.cancercompass.com/message-board/message/all,19394,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom just turned 76 & on Thanksgiving day was experiencing black stools. She was admitted to Saddleback Hospital in Laguna Ca. where they did a "scope" down her throat to see where the bleeding was coming from. A "mass" was found in her upper intestine near the pancreatic area. Saddleback immediately sent her to UCI Irvine where the Whipple surgery was to be done the next day. The surgeon was not satisfied with Saddleback's scope and performed their own where they were able to remove the mass thru her throat. (I'm told this procedure is only done at this hospital) The "mass" turned out to be a very very large pollup which was non-cancerous but they were only able to remove 95% and the 5% was left. The area that was left was scraped and a biopsy showed it to be a high grade "pre-cancer". At the time the surgeon didn't feel that the whipple surgery was necessary and that a scope every 3-6 months would be all she needed for now. They would keep an eye on it and biopsy each time. This recent checkup the surgeon strongly suggested the Whipple. He says that she can have another scope to give her more time to prepare for the surgery but he said she would eventually need to have it. The area left is pre-cancerous but he guarantees within 2 years it will turn into cancer. My mom is terrified and I am terrified. We thought this nightmare was behind us but it looks like its just the beginning. My mom is active she has no symptoms. I can't imagine her going through the recovery. After reading some of the experiences I'm having second thoughts on this surgery. Can someone please give me some advise? I'm feeling very lost and confused. julie2 Fri, 04 Jan 2008 00:00:00 GMT Hi -My mom is 65 and had the Whipple done in Sept 07 due to kidney cancer mets in her pancreas.  The surgeon performed the typical Whipple but took the entire pancreas due tomets in the head, body and tail.  She did get to keep her spleen. She was in the hospital for 2 weeks post-surgery and had no complications.  The recovery has been very slow and hard at times, but the tradeoff is worthwhile.  She lost ~20 lbs, became instantly diabetic and has to take enzymes before and during every meal which does make eating more an ordeal than a pleasure sometimes.  Four months post-surgery she is still struggling with diarrhea and trying to regain some of the weight, but the day-to-day is actually pretty good.  She eats what she wants and very slowly is regaining her energy.  She goes out to lunch, attends a dance class (takes it very slowly), grocery shops, etc.If your mom is at risk for pancreatic cancer it seems the surgery might be even more worthwhile since pancreatic cancer is often so aggressive.  It is extremely important to find a surgeon who has performed many Whipples -- there is a proven high level of correlation between surgeon experience with the Whipple and successful outcomes. There is no doubt that the surgery is tough and the risks have to be carefully considered but it is entirely possible to come through it with decent quality of life afterwards.   Everyone who goes through it has their own story, but I want to add another positive one in the mix.  Good luck to you and your mom.Katie   KatieO Sat, 05 Jan 2008 00:00:00 GMT Julie, My 53 yr old wife Sun, had a Whipple procedure done on 31 Oct to remove a 2 cm tumor from the ampullary area of her pancreas. She fit none of the cancer profiles, i.e., was very active, physically toned and fit, non-smoker, non-drinker, no family cancer history, etc. Her recovery has been slow. She still has pain, is still draining puss from a secondary hole the surgeon cut in her belly. She just started chemo this week, which will run in several stages with and without radiation, for 6 months. She tries to be active, and is up and around every day. Yesterday, she walked over a mile by herself, although can rarely go from the car to a store or restaurant without holding onto something or someone. She eats quite a bit but can't recover the 15 lbs she lost post surgery. She is down to 90 lbs. Her surgeon keeps saying she will recover in time. She has seen 4 oncologists, including 2 from the Moffitt Cancer Center in Tampa. Each has a different proposal for follow on treatment. We've corresponded with several other people through this site who have had or are facing a Whipple. Each has a different story of their presurgery diagnosis and recovery. One lady in Ohio was completely recovered 2 weeks later. Sun has been fighting complications for over 2 months, so I guess it depends on the individual. And all of the burden is not hers. If you are her primary caregiver, plan to be by her side for everything. Initially Sun was not even able to sit up or lay down on her own without assistance. And it seemed there was no place I could touch her to help without hurting her more. Good luck to you and your mom, Our thoughts and prayers are with you. George & Sun, Cocoa Beach, FL Rising Sun Sat, 05 Jan 2008 00:00:00 GMT thank you Katie for taking the time to respond. Your mother's recovery is very encouraging and I pray she continues to do well. My mom will have a consultation on Monday with another surgeon and we are hoping that they may shed some light on the best action to take. Thank you again and take care. Julie julie2 Sat, 05 Jan 2008 00:00:00 GMT On 1/5/2008 Rising Sun wrote:Julie, My 53 yr old wife Sun, had a Whipple procedure done on 31 Oct to remove a 2 cm tumor from the ampullary area of her pancreas. She fit none of the cancer profiles, i.e., was very active, physically toned and fit, non-smoker, non-drinker, no family cancer history, etc. Her recovery has been slow. She still has pain, is still draining puss from a secondary hole the surgeon cut in her belly. She just started chemo this week, which will run in several stages with and without radiation, for 6 months. She tries to be active, and is up and around every day. Yesterday, she walked over a mile by herself, although can rarely go from the car to a store or restaurant without holding onto something or someone. She eats quite a bit but can't recover the 15 lbs she lost post surgery. She is down to 90 lbs. Her surgeon keeps saying she will recover in time. She has seen 4 oncologists, including 2 from the Moffitt Cancer Center in Tampa. Each has a different proposal for follow on treatment. We've corresponded with several other people through this site who have had or are facing a Whipple. Each has a different story of their presurgery diagnosis and recovery. One lady in Ohio was completely recovered 2 weeks later. Sun has been fighting complications for over 2 months, so I guess it depends on the individual. And all of the burden is not hers. If you are her primary caregiver, plan to be by her side for everything. Initially Sun was not even able to sit up or lay down on her own without assistance. And it seemed there was no place I could touch her to help without hurting her more. Good luck to you and your mom, Our thoughts and prayers are with you. George & Sun, Cocoa Beach, FL George, thank you so much for your experience. I pray for your wife's continued recovery and strength. I know my mom will have a long road ahead no matter what choice she makes regarding the surgery. Thank you again and take care. Julie julie2 Sat, 05 Jan 2008 00:00:00 GMT  On 1/4/2008 julie2 wrote:My mom just turned 76 & on Thanksgiving day was experiencing black stools. She was admitted to Saddleback Hospital in Laguna Ca. where they did a "scope" down her throat to see where the bleeding was coming from. A "mass" was found in her upper intestine near the pancreatic area. Saddleback immediately sent her to UCI Irvine where the Whipple surgery was to be done the next day. The surgeon was not satisfied with Saddleback's scope and performed their own where they were able to remove the mass thru her throat. (I'm told this procedure is only done at this hospital) The "mass" turned out to be a very very large pollup which was non-cancerous but they were only able to remove 95% and the 5% was left. The area that was left was scraped and a biopsy showed it to be a high grade "pre-cancer". At the time the surgeon didn't feel that the whipple surgery was necessary and that a scope every 3-6 months would be all she needed for now. They would keep an eye on it and biopsy each time. This recent checkup the surgeon strongly suggested the Whipple. He says that she can have another scope to give her more time to prepare for the surgery but he said she would eventually need to have it. The area left is pre-cancerous but he guarantees within 2 years it will turn into cancer. My mom is terrified and I am terrified. We thought this nightmare was behind us but it looks like its just the beginning. My mom is active she has no symptoms. I can't imagine her going through the recovery. After reading some of the experiences I'm having second thoughts on this surgery. Can someone please give me some advise? I'm feeling very lost and confused.Hi Julie,  not sure if your still reading these messages but I thought I'd share my experiences.  I'm 38 and following tests back in July was given odds of 90% that I had pancreatic cancer. I was therefore informed that I had to have a whipple to give me any chance of surviving the disease. Luckily the surgeon at my local hospital was a bit of an expert and had performed 60 previous ops, which put me a little more at ease.  I wasn’t really sure what to expect, never having been in hospital before, and had no idea want the recovery would be like.  Thankfully the op went like clock work and I was out of hospital within 10 days.  The main problems I had following the op was gaining the weight I’d lost – around 2 stone, fairly constant stomach pains and malnutrition / diarrhoea. At the time it was difficult to comprehend life being back to normal but I’m now six months down the line and things have improved dramatically.  Thankfully, 2 months after the op I was told it wasn’t cancer but chronic pancreatitis, still surgery was the best think I could have done.  I suppose the positive things I can pass on are the pains did subside and are now the exception not the rule.  I’m still working on the malnutrition but things have improved since I’ve been taking enzyme supplements (Pancrex) and have but on nearly a stone since the op. The only thing left is regaining my energy levels, which are improving on a daily basis.  I was, as you are, worried about my quality of life post op after reading forums on the whipple procedure but for me it’s turned out well.  I sincerely hope everything goes well and you and your mum get though this.  For me the main thing that helped was staying positive no matter what the doctors were telling me. sdrobo Wed, 13 Feb 2008 00:00:00 GMT On 2/13/2008 sdrobo wrote: On 1/4/2008 julie2 wrote:My mom just turned 76 & on Thanksgiving day was experiencing black stools. She was admitted to Saddleback Hospital in Laguna Ca. where they did a "scope" down her throat to see where the bleeding was coming from. A "mass" was found in her upper intestine near the pancreatic area. Saddleback immediately sent her to UCI Irvine where the Whipple surgery was to be done the next day. The surgeon was not satisfied with Saddleback's scope and performed their own where they were able to remove the mass thru her throat. (I'm told this procedure is only done at this hospital) The "mass" turned out to be a very very large pollup which was non-cancerous but they were only able to remove 95% and the 5% was left. The area that was left was scraped and a biopsy showed it to be a high grade "pre-cancer". At the time the surgeon didn't feel that the whipple surgery was necessary and that a scope every 3-6 months would be all she needed for now. They would keep an eye on it and biopsy each time. This recent checkup the surgeon strongly suggested the Whipple. He says that she can have another scope to give her more time to prepare for the surgery but he said she would eventually need to have it. The area left is pre-cancerous but he guarantees within 2 years it will turn into cancer. My mom is terrified and I am terrified. We thought this nightmare was behind us but it looks like its just the beginning. My mom is active she has no symptoms. I can't imagine her going through the recovery. After reading some of the experiences I'm having second thoughts on this surgery. Can someone please give me some advise? I'm feeling very lost and confused.Hi Julie,  not sure if your still reading these messages but I thought I'd share my experiences.  I'm 38 and following tests back in July was given odds of 90% that I had pancreatic cancer. I was therefore informed that I had to have a whipple to give me any chance of surviving the disease. Luckily the surgeon at my local hospital was a bit of an expert and had performed 60 previous ops, which put me a little more at ease.  I wasn’t really sure what to expect, never having been in hospital before, and had no idea want the recovery would be like.  Thankfully the op went like clock work and I was out of hospital within 10 days.  The main problems I had following the op was gaining the weight I’d lost – around 2 stone, fairly constant stomach pains and malnutrition / diarrhoea. At the time it was difficult to comprehend life being back to normal but I’m now six months down the line and things have improved dramatically.  Thankfully, 2 months after the op I was told it wasn’t cancer but chronic pancreatitis, still surgery was the best think I could have done.  I suppose the positive things I can pass on are the pains did subside and are now the exception not the rule.  I’m still working on the malnutrition but things have improved since I’ve been taking enzyme supplements (Pancrex) and have but on nearly a stone since the op. The only thing left is regaining my energy levels, which are improving on a daily basis.  I was, as you are, worried about my quality of life post op after reading forums on the whipple procedure but for me it’s turned out well.  I sincerely hope everything goes well and you and your mum get though this.  For me the main thing that helped was staying positive no matter what the doctors were telling me. Thank you so much for sharing your experience; I just happened to check the messages and just now saw yours. My mom will be having surgery the day after tomorrow March 19 and we are hoping for the same positive outcome. thank you again and take care:) julie2 Mon, 17 Mar 2008 00:00:00 GMT