Recovery Advice/Expectactions for a Distal Pancreatectomy

I had distal and spleenectomy in 2022. This is a complicated disease dependent on she, mutations, stage snd comorbities and previous health ststus otherwise you ste just comparing apples to oranges. I was 64 when I first started with symptoms had Kaiser. Stay away from them! I live on west coast so not a lot of choices here. Mayo is good as well several other hospitals on east coast. Go to a center where they had a lot of these procedures. At 65 changed insurance to Medicare advantage and that was a good choice but my surgeon though smart didn't have a lot of experience surgery and I had a leaking pancreatic duct after surgery which made it a long and complicated recovery and delayed my start of 5FU chemo by 1 month, I was 65 then and used to do a lot of walking before surgery and was pre diabetic before and didn't drink and ate fairly healthy but was overweight a bit. My mutations were KRASG12, TP53, snd ATM with variant based of unknown origin (somatic not inherited). However my dad had aggressive pancreatic cancer like mine so I'm nloodwoeyis being sent out to another facility for germline or inherited testing now since research is always providing new information. I did 5FU chemo for 6 months (2x per month) and tolerated it fine just some nausea and weakness but I continued walking and volunteering snd working my small consulting busines. My cancer antigen went down to 6. Was off chemo for 4 months and then it went to my liver and peritoneum. Peritoneal were very small and biopsy was negative but my intelligent drs assumed is was cancer even though they didn't grow for 1 year ) always err on side of caution, I was on GA gem abraxane from Jan 24 to Dec 24 to get rid of liver lesions. I did though more weakness and nausea on that. Only MRI showed liver lesions ( not CT or PET) when lesions are low 1.0 cm range. You will get hair loss, but can avoid or decrease neuropathy in feet or hands if you get the iced booties and mittens from Amazon and they are very inexpensive, but highly recommended. I had one stubborn 0.9 cm lesion left that I radiated MRIdean) at City of Hope gor 3 sessions (looking back maybe back was too few) but my cancer antigen diwn to 11 that was October 2024. I was still on GA until Dec 2024. In early January 2025 after genetic testing I was considered cancer free and was just placed on gemcitabine for maintenance. I took a 3 week break from that in late March and I could feel pain in the abdominal peritoneum snd assumed those nodules ( since I hadn't been on abraxane for 3 months and I have aggressive cancer, was growing though they wete too small to be seen on scans, but gtom the area of pain I knew that's what it was. I also had another lesion in my liver though it was a bit difficult to see on CT scan. My oncologist insisting I do the phase 3 RMC6236 clinical trial but thete was was only a 50/50 chance I would get the drug at hand and I worked way too hard to ensure my survival thus far snd for me, I wasn't willing to take the risk; not when I knew abraxane would work on the peritoneum nodules (nobody told me this( it was just anecdotal based on my own experience). I went back to Hoag dr who was willing to put me on gem/abraxane; but not right away. I did the Naliri chemo for almost 2 months which didn't work at all! I did histotripsy in July on the now 3 liver lesions snd it has worked so far. Begore histotripsy my cancer antigen was almost at 14000! After histotripsy and being on gem abraxane since early August my ca19-9 is below 70 or 40 (I'll get my new number this morning). However, I developed several UTIs in July that wss misdiagnosed through urgent care and then my urologist again too young and inexperienced wasn't able to get biopsy just urine sample that showed cancer cells by cytology and showed I had aggressive urolethial cells or bladder cancer snd wanted to put me on keytruda. But without a biopsy this didn't make sense to me do I switched my bladder care to city of Hope and found out this week afyer he did do a biopsy that was negative that cytology of cells isn't a definite and I don't probably have bladder cancer though we are waiting on a RNA blood test for sure. I was then sent to infectious disease dr at Hope since I had BK virus through bladder fluid but he ssid levels wete not high enough and so after suffering for 5 months with blood in my urine and a severely inflamed bladder, my infectious disease dr tells me gemcitabine is known for causing cystitis and thus hematuria!!! so now I'll speak to my pancreatic oncologist about decreasing my gem. Dint be afraid to consult with many drs or to switch drs if medical advice you get sounds sketchy. And pray a lot whatever faith you have in God. Good luck to you!!

I had a distal pancreatectomy and splenectomy in May 2023 at MGH Boston. I had laparoscopic/robotic surgery which I'm assuming you're able to have at the Mayo. I was uncomfortable for the first 24 hours. I was able to eat the next morning and did some walking. I was advised prior to surgery that I could be in hospital for up to 72 hours however I was discharged in 48 hours. Pain was maybe a 5 -6 the first 24 hours and reduced to a 3-4 at discharge. Tylenol was enough to ease the discomfort once I was home. Getting up and walking helps and is highly recommended. It sounds like they know you have a neuroendocrine tumor which is good. They were not able to definitively diagnose my tumor prior to surgery as they could not get a good biopsy. The decision was made to go forward with the surgery and remove the tumor. Unfortunately in my case it turned out to be Stage 3 adenocarcinoma. One month after surgery I started on 12 rounds of chemo followed by six weeks of chemo radiation. The good news is that 2 1/2 years later I'm still cancer free. The surgery has had no impact on my lifestyle, diet or ability to perform activities. I am a fairly active 72 year old. I thank God every day for good medical care and good fortune. Best of luck with your surgery.

@mnewland99
I meant to write that age will play a factor, probably, in Howe well you tolerate chemo, I day probably as there are those who can tolerate chemotherapy in late 70s or 80s. Also, that young urologist at Hoag who told me to go off my blood thinners for 2 days each when he did the cystoscopies snd TRIED to do tne biopsies / DONT GET Off blood thinners!!! I got 2 new blood clots in my lungs because of that!!! My city of Hope urologist told me to stay on blood thinners and he did my biopsy just fine!

@stevm
Love your story! Which mutations did you have?

Hi Jennifer, here is the stuff that helped me:
*I was in the hospital for 5 days (one full day in surgery/ICU and then the next 4 in recovery). The first 24-36 hours were the most uncomfortable, but I did not have a pain pump.
* I was walking the next day.
* You will only eat liquids/soft foods for about 48 hours.
* Expect constipation after all the medicine the give you.
* Bring a warm blanket - I was freezing at night despite all the warm blankets they put on me.
* Bring a pillow for the ride home - the seat belt is painful.
* Since my husband stayed in a hotel nearby while I was in the hospital, we booked the hotel for an extra night once released so that after they discharged me I had another 24 hours near the hospital in case something went wrong.
* Have help at home for at least a week after getting home.
*I only ever took Tylenol once I got home.
* Since you have about a month, maybe work with a PT or trainer to strengthen your core/ab area. That will be much weaker after surgery so the stronger it is now, the better it will be during recovery.
* Plan to eat smaller meals at first. I was eating one hard boiled egg and a half piece of toast. Or one grilled chicken tender with a small amount of veggies. It gets better, but it just takes time. Even 18 months after surgery, I cannot overeat or I feel terrible. Also, watch for eating too much fat at one time (even healthy fats).

Good luck!

Hello, I had a PNET distal surgery about 1.8 cm in the tail removed at Mayo Rochester in July 2024 by the Dr. Truty team. I had my spleen and gallbladder removed as this is standard procedure. I had an open surgery. My operation was fine. About 1/3 of my pancreas was removed and I think 23 lymph nodes. No cancer in the nodes. Recovery was fairly easy. You do need family support but not too much. Nurses and doctors were great. I was 65 at the time. Little pain. I did have more pain in my left shoulder than anywhere else and that was due to the air they use to inflate your insides bubbles up to that left shoulder area. Message helped with that. But no pain in the incision area at all. The key is to be able to poop following the surgery as surgery can put bowels to sleep. Once things get moving in that regard then pretty clear to leave hospital. We got an accessible hotel room and I was able to shower after leaving the hospital before I was driven home the next day from Rochester about 6 hours. Yes you must go to a pancreatic center of excellence which means they do a lot of surgery. There are very few in the country. Recovery at home was pretty easy too. I had a bed rail to assist my hauling myself out of bed and I had a toilet assist and a chair in the shower. All good and easy. I had to give myself shots of blood thinner for 30 days and that was okay too. I wish you all the best.

Oh as far as eating…in the hospital I don’t remember but it had to be light at first and then it picked up. I think I was in the hospital a total of 5 days I don’t think I was that hungry and they introduced food slowly and I think I had to stay away from fatty foods, etc. but after discharge I had no restrictions on diet except that I’m type 2 diabetic (from years before surgery). I take no pancreatic enzymes to this day. I proudly live with a giant scar. I know I’m fortunate I can’t even tell you. I wish you all the best.

Hello Jennifer,

Bunky2078 laid it out almost exactly what I experienced. Distal pancreatectomy/splenectomy was just under 3 weeks ago. Surgery was on a Monday and I was discharged on Friday, went right from surgery to the med/surg floor
- Didn't need or want opioids, Tylenol was enough, the pain was manageable
- Wish I had known how big the incision was going to be
- As long as I wasn't nauseous, got liquid diet for one day and was eating solid food on the second day post surgery
- I had a great nursing team who told me to get up and walk and I did, I was able to navigate to the bathroom by myself the day after surgery and I kept walking including was back out with my dogs one day after I got home
- Wish I had known what an annoyance the Foley catheter is
- Wish I had been better prepared to deal with the JP Drain. I went home with that and had to manage it for a little over a week, weird hole in my side once it was removed and I was skeptical it would close on it's own but it has
- Also a new adventure giving myself an injection of a drug to prevent blood clots, I will take the last one this weekend
- Wish I had known that it might take a week for the intestines to get moving again, I was eating small meals but it was still uncomfortable
- Wish I knew what the future is going to be!
Best wishes to you

@mnewland99 I am so bad at understanding the terminology. The results indicated that I did not have an inherited gene. Below is a copy of the image from the report.

GenDICER1
Variant: c.2027C>A (p.Arg676Gln)
Zygosity: Heterozygous (you have one copy of this change)
Classification: Uncertain significance

@mnewland99
This was very helpful. Incidentally, i have exactly the same gene mutations.
A few weeks ago i had blood in my urine, alot! It continued for two days then again at my next Naliri treatment. No one could pinpoint what it was, and now it’s no longer a problem. No pain with it. They suspected cystitis. Have a referral st Urologist but since it hasnt happened in a few weeks I dont think i have the bandwidth for another doctor appt!
Meanwhile, having a needed hernia repair surgery on the 15th so off chemo for one month. Also have to drop eliquis 2 days before surgery.
How long were you off of eliquis? Did you gradually stop ? Im a little concerned about just stopping it completely on one day.