Distal Pancreatectomy, Splenectomy, Pancreatic Abscesses

I had the same operation on November 20 had drains put in and removed been on the anti-biotics 2 to 3 diffrent ones at a time been in out of hospital lost over 60 pounds. I don't know if there is an end .
my doctor told me there was 25% chance that i would never be rid of the pain . Yesterday feb. 22 i was told that i was in that 25 %. I hope and pray for you and your husband that he won't fall in that 25% My next step is going to be Sloan Kettring in NYC

I developed acute pancreatitis and psuedo cysts from gaulstones and lost most of my pancreas. 1.5 years later my spleen was removed. This was several years and many operations ago. I have to take enzymes and still deal with pain management, but you can live. Your whole world has to change. You will need to support your husband and amend your life as well. Try to understand that the pain he is in will be real - even years later.

The open surgery will take several months to heal and this is critical - NO LIFTING- This can cause a hernia and more operations. Absolutely NO LIFTING for about 6 months of anything over a couple of pounds.

There also might be drainage and the wound might reopen a little to purge waste. This in not that abnormal. 2 of my wounds did have this happen weeks later.

Low fat diets are a key to survival. Small meals also.

Get all of your medical records including surgery notes- Have them reviewed by someone you know and trust in the medical feild that is not a current Dr of your husbands. This is to insure that all is on the up and up. If you live near a local Univeristy that has a good medical program, you may want to start going there. They tend to be up on new issues were most intrinched Dr's are not.

Good luck

i had a slenectomy and distal pancreatectomy on the 25 august could someone tell me how long the recovery time is as i still have pain some days worse than others.

many thanks s

I had my distal pancreatectomy with splenectomy on 7/30/10, and was hospitalized four more times after surgery for complications--mostly due to fistula and abscess. My last time in I went into septic shock and they drained almost 350cc of horrible goop out of my abdomen. If you read up on these procedures, the complications occur in 60% or more of cases. So, you're not experiencing anything out of the ordinary, but frightening nonetheless.

It has been over a year and a half, and while I am much better, I still suffer from abdominal cramping, weird bowel movements and a little bit of nausea at times. I have taken replacement enzymes (Creon) in various doses, and that seems to help a little. Still, no one can tell me conclusively whether I'll ever feel like my "old" self.

The thing that I keep in mind is that regardless of the minor inconveniences I have to bear, I have been diagnosed with pancreatic cancer and I am alive. Even though my type, non functioning neuroendocrine, is much rarer and follows a much more indolent course even if it does recur. I have done significant research and have found that even patients with recurring or metastatic disease can live a long time. It's not the death sentence that adenocarcinoma tends to be. Still, there have been patients with adeno who have also lived much longer than the odds.

My best advice is this: BE POSITIVE, and be your own advocate. Ask questions, do research; the internet has a wealth of information that can make you better informed. Question and or ask for clear explanations about everything. Join a group like PANCAN and Gilda's Club so that you can get all the support you can get, even beyond family members and close friends.

My doctor tells me that he doesn't like to talk in terms of cure, but he doesn't tell me not to go out there and live. Believe me, everyday is precious and there is always someone else out there less fortunate.
Good luck to all of you!

Bob
Fort Lauderdale, Florida

Bob,
Nice to know another person that has been through the same thing. I had my operation 1/26/10. I too, had a distal pancreatectomy and splenectomy. My diagnosis was functioning nets....it was producing the hormone calcitonin. I had to go back into the hospital two weeks later and I had 1000..... Yes 1000ccs of fluid removed...then a 400 and 600 ccs of fluid removed later. I have suffered pains eating and I still have pains. They have recently discovered another spot on or near my pancreas or surgical bed. I had an octreoscan which the spot took the uptake. My surgeon thinks it may be something else other than cancer....oncologist plans on a fine needle biopsy. I will have results hopefully by mid December.

Have you or do you still have pains?

Patient of nets....live on brother!

Hi There, I am a 28 year old female who in june 2011 had a neuroendocrine tumour removed along with distal pancreatectomy and spleenectomy. I was back in hospital 3 weeks after surgery with an infection when they chose to put in a temporary stent. It was removed 3 weeks later but then a month after that I was re admitted with a twisted bowel due to adhesions caused by the surgery. 8 months later, I have started getting pain again after eating/drinking and worry the cancer has come back. I had my 8 month bloods and scans done and am awaiting the results next week.

Hi, im also a 28 year old female and on 10/8/12 had a distal with splenectomy, i had a 9cm tumor in the tail of my pancreas which pushed against my spleen, doctors said my spleen was almost as big as my liver. Surgery went well was out of the hospital in 8 days, since then things have been pretty ok, i had a pancreas attack maybe a month or two after surgery, wasnt as bad as when i had the huge tumor but enough to where it hurt bad. Since then ive had little pain but my worry is after i eat i get a weird pressure where the tumor was and feels similar to when it was there, its not really painful just uncomfortable and doesnt last long.im scared to death it has come back, im scared to death im going toget cancer, its eating me up, i know it could be worse and believe me im very thankful, just scared. Does anyone know if it is normal to still have that weird pressure this long after? I go for my first CT next friday then back to my surgeon to see whats going on. Thanks for listining i needed to vent.

Hello,
Yes I'm glad someone addressed the pain after you eat. I had a 13cm True Cyst which is pretty rare removed plus the distal part of the pancreas with splenectomy. Hospitalized for 7 days and a long long recovery.I am still not my ole self. I have the oddest pain after I eat or drink especially water. I feel nauseated and have a back ache. I have been in for my a 6 mo. follow up April 22, 2013 only to find it is growing back. My surgeon was not able to get it all because it was to close to some major blood vessels. I too am worried about cancer and I'm afraid of what they will find this time when they do a EUS. I am a 56y/o female and am afraid this thing is trying to kill me. I am sad all the time and just don't feel right. Does anyone else have any advise. Thank you all so much

Hello,
Yes I'm glad someone addressed the pain after you eat. I had a 13cm True Cyst which is pretty rare removed plus the distal part of the pancreas with splenectomy. Hospitalized for 7 days and a long long recovery.I am still not my ole self. I have the oddest pain after I eat or drink especially water. I feel nauseated and have a back ache. I have been in for my a 6 mo. follow up April 22, 2013 only to find it is growing back. My surgeon was not able to get it all because it was to close to some major blood vessels. I too am worried about cancer and I'm afraid of what they will find this time when they do a EUS. I am a 56y/o female and am afraid this thing is trying to kill me. I am sad all the time and just don't feel right. Does anyone else have any advise. Thank you all so much