What is your Recovery Advice for a Distal Pancreatectomy?

@gamaryanne good luck with surgery? Is it really needed? I was told about 1 year ago it was very small and it's presence hadn't been mentioned on any image reading since - which is odd to me. I skipped eliquist for 2 days or 4 pills at 5mg each. The Dr tried 2 cystoscopies about 2 werks apart. When he was unsuccessful in getting a biopsy? I went to city of Hope in Irvine. That urologist told me not to go off blood thinner begore surgery but I thought he was wrong based on former urologist and went off for 2 days. Well he was right. I went to. ER for trouble breathing and turned out I had 2 blood clots in my lungs where they thought it was a month old. Good luck to you!

Hi Jennifer,
I had a distal pancreatectomy on Oct 17th, City of Hope in Phoenix for adenocarcinoma. (My spleen had already been removed 50 yrs ago!) I am 74 and considered myself pretty healthy until all of this happened...
My cancer was discovered early so I pushed for surgery before chemo. Two doctors said NO to surgery first but City of Hope came through and I'm so thankful. The cancer had grown 56% by the time they did surgery, 6 weeks after the biopsy.
I was scheduled to have the surgery robotically but the surgeon had to switch to "open" once he got in there. Open surgery makes for a more difficult recovery, so maybe ask about the likelihood of that happening. Also, one of my other doctors had informed me that if he started the surgery robotically but found it more challenging, then he would just close me up and not complete the surgery. You might check on this also. Dr. Singh at City of Hope Phoenix is a specialist in pancreatic surgery and, thankfully, he tackled the tangled cancerous mass and removed it in its entirety. This doesn't mean it won't come back, unfortunately...
I was in the hospital for 6 days after surgery. I was able to move around on my own by the 3rd day and had an appetite but ate very lightly. Take a stool softener to help your body recover! I had Tylenol and a muscle relaxant to help with pain, though I was never in a lot of pain. Getting up and walking as soon as possible is very important. They gave me low dose Oxy to help me sleep but my surgeon also suggested Benadryl, which has less "after-effects". Melatonin is ok too, but it doesn't work well for me. The pancreatic fluid drain was removed before I left the hospital. So, really, I just left with a tender belly and wore a binder around my abdomen for a week. I stayed with a friend in AZ for 4 days after surgery and then had a post-op appointment before going home to Oregon. Once home, my sister stayed with me for 5 days. I only needed help with lifting things, shopping and walking my dog for the first few days. By then I just wanted to do things myself! Eating continues to be a difficult situation. I've lost 10 lbs and don't want to lose more, but most food isn't appetizing. I'm sick of yogurt. I had a small piece of turkey on Thanksgiving but couldn't eat it, tho' the mashed potatoes, green beans and Keto cheesecake were good! Maybe you'll have better luck with meat, but you definitely need protein.
They prescribed Creon (pancreatic enzyme), which I'm reluctant to take as there is a family history of gout and when I get it, it's awful. I take Creon maybe once a day and also take papaya enzymes after a small meal.
6 weeks after surgery I can do almost anything I want (except eat), which is exactly what they told me.
Now I have to decide on doing chemo???? I am very against chemotherapy, but, of course, it's the standard of care for cancer patients. Have you had chemo? If so, how have you done with it?
I wish you great success with your surgery. Sending a big HUG... Jill

I had mine in his past April. My tumour was mid pancreas. So lost 1/2 my pancreas but it wasn’t working anyway. Chose to keep my spleen…. Bad choice should have let them take it. Had 4 vaccines because it was not happy, was trying not to do that. Oh well. Eating took a bit to see if the pancreatic enzymes were working well enough. Went in and out of that. Ended up not needing them. Lost some weight and gave up trying to gain it back. lol. Upside?! Needed new clothes. Haha. My tumour was completely removed with good margins. It spread to one out of 9 lymph nodes. Had zero symptoms before and still have none. No treatment either. Being monitored every 6 months with scans for 5 years. All the best. (I had a new granddaughter due/born a couple of months later so had huge motivation for my recovery).

@midford
Was it adenocarcinoma? How big was it before being removed?
And are you saying you never had chemo before or after surgery? Are you able to eat normally now, or at least as you did before surgery? Sorry for all the questions but I'm at a crossroads for what I do next...(and I had my 1st grandson born 6 months before my diagnosis, almost 1 yr old now!) Jill

@reme51
No. Mine was a non functioning Neuroendocrine tumour that was plugging up 1/2 my pancreas. So it was small but 1/2 my pancreas had withered away. Also blocking a major vein that needed patched as well. No treatment before as we choose surgery and surgeon left my treatment up to an endocrinologist and they said there is nothing left to treat as surgeon is confident he got it all. But still going to follow me (both of them) every 6 months with scans/blood for 5 years. My first scan was Sept. My A1C was already going high before so I learned a lot about diet/exercise and brought it down. I’m doing that again. Likely one day be Type 2 diabetic officially and have to do meds then. Just staving those off as long as possible. Please ask away. Happy to help. Just know it’ll be from my knowledge. None of us are doctors. I wish you well. Oh congrats on da baby!! So much fun! Hahaha. I had a very clear focus to my recovery. Probably helped somewhat.

Had that surgery in April. Went well, although they kept me there for over a week before discharge. Took pain relievers and muscle relaxers for about a week after that. Guess that's normal for open incision. There is still some soreness with slight restrictions of movement, but nothing too bad.

I read that good fitness helped recovery so I tried to walk a lot before the surgery. Not so much in the days after...also you won't be lifting much for a while.

@jenniferweirich1, you got some great responses from fellow members. I added your question to the Neuroendocrine Tumors (NETs) support group too. See it here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

You might also appreciate these related discussions:
- Distal pancreatectomy scheduled at Mayo: Logistical questions https://connect.mayoclinic.org/discussion/distal-pancreatectomy-scheduled-421-questions/

- What's recovery after distal pancreatectomy and splenectomy like?https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/

After reading the tips from others, do you have any further questions?

@mnewland99
Reading this about eliquis. A bit nervous now.
Yes, I do need the hernia fixed. It is quite a bulge on the left side