Pancreas and spleen removal: how is life afterwards?

I had chemo and radiation then the Whipple 2 1/2 years it came back, having pancreas removed and I will be diabetic. Very nervous about that, will be a challenge. We all are so different. Hugs

Hello,
I had distal pancreaectomy with removal of spleen in October 2022, and had a few complications afterwards; but I suggest going with a surgeon with a lot of surgical experience. Mine had only 2 years , and I think that it might have been the reason for the complications; though he also works at Keck USC and that's suppose to be a Center of Excellence. I had mine at Hoag, which is not, but if you have a surgeon who also does surgeries at a Center of Excellence does also have the same relevance - I don't know. By mid-December I was better and then did 12 rounds of chemo. I did pretty good during the chemo. Following surgery I took 2 Creon before every meal and about in May or June of this year I didn't need to take it anymore. I did become a diabetic and wear a glucose monitor with app on my phone and that has been my biggest challenge (keeping my blood glucose at a normal level). I went back to work part time in July. Are you having all of the pancreas removed? A nurse told me I had 75% of mine removed, but my surgeon would never say how much. Be sure to walk as much as you can after surgery in order to get the air out of your stomach and any fluid out of your lungs. I have a history of interstitial lung disease, so I think that added to some of my complications following surgery since I already had some scarring in my lungs. Good luck to you!!!

I had adenocarcinoma did my chemo 8 rounds then 3 weeks of radiation at Mayo. Had my tumor removed it was dead. I had the whipple I still have part of my pancreas.
I am not diabetic. I lost 20 pounds that I really didn’t have to lose but it’s slowly coming back I gained 3 pounds the past few months. I just had to figure out how many enzymes to take which helped with the gas and bloating. I am back to doing everything I normally do like riding my horse jumping fences running periodically. Riding bikes etc. it’s just hard to figure out the diet.
I have had clear scans the past year. It’s been a year since my Whipple. I am not doing any chemo of any kind. So far so good. Hope this helps some. Good luck

I see your response now to @hawk32 that you are having full removal now. So the radiation didn't work? Crickard70 in some ways you are very lucky. My last round of chemo was the end of June 2023, and unfortunately it appears it might just beginning to come back. The only indication I have is that my CA19-9 is rising very quickly. I'm getting another CA19-9 in a few days to see if I am once again in the "cancer zone". If it does demonstrate that, then I can thank
@markymark and other other commenter on their replies to a post I made which made me become more assertive with my drs about asking for further testing. I'll be getting a PET scan and the Sigatera test very soon. My oncologist also alluded to radiation, but I'm wondering if the majority of tumors that come back at the site of resection, why don't we all just get the entire pancreas removed to begin with as it seems those nasty microscopic cells are just lying in wait there. Is it because the surgery would be too much for the body to handle at one time? Does anyone know? I'm with you in Spirit and will be praying for you. Please post when able after your surgery!

Hello ashley2235,
You mentioned before that you had surgery at the Mayo Clinic? in Rochester, yet your home base is Kaiser? If not too personal, I was wondering insurance wise, how you were able to do that? Did you have to pay for the surgery out-of-pocket as Kaiser is basically an HMO? I'm wondering since this is the period when we all can make changes to our insurance for the upcoming year and my husband really wants me to go to Mayo Clinic if it's discovered its come back. Right now I have Blue Shield HMO.
So happy for your outcome! I have 2 relatives who went to Mayo Clinic (Rochester and Scottsdale), and they received treatment that was exemplary (though none of it was for pancreatic ca).

I have Kaiser HMO in Georgia. It took roughly 4 months of fighting, but I was eventually approved for Mayo. I did not have to pay out of pocket. Basically, I had to had to be seen by an in-network surgical oncologist first. That MD declared he was unable to perform the surgery, and he referred me to Mayo. Kaiser told me they have a working relationship with Mayo, so it was approved. Several people had told me that legally your insurance provider cannot deny coverage for services not available within your network. Meaning, once the in-network surgical oncologist said he was unable to perform surgery, that Kaiser was obligated to cover the procedure at an outside facility.

Hi Ashley2235,
Thank you for your quick response! That is amazing about your situation. I had Kaiser last year before I turned 65 and told them (most likely it was stage 1) and the primary didn't even order an ultrasound, much less any CT when I complained of back pain and my blood sugar suddenly went bonkers from taking no metformin to blood sugars in the 300 and 400 range and had to take metformin, but then that didn't even work (and my dad had pancreatic cancer)! I switched to Blue Shield and went with Hoag Hospital. I knew nothing about Centers of Excellence until I joined this online group which I think has been a month or two now. Hoag does have access to surgeons that can do the surgery, but it's not just about the surgery, it's about the entire plan of care (i.e., chemo before or after surgery, radiation, etc., taking the entire pancreas, etc.) that can make all the difference in the world. Good for you that you were such a strong advocate for your health as going through this process, I really do wonder about these doctors relative to pancreatic cancer. They tried to make me "drink the Kool-aid" that I was cancer free because my margins were clear and my antigen low after chemo, and they kept telling me to be positive and seemed a bit annoyed that I was so cautious in saying or feeling that I was cancer free and now that it seems to have come back, I no longer feel guilty for not singing Kumbaya.

Has anyone had their pancreas and spleen taken out? How did diet go afterwards?

I had pancreas, spleen, and gallbladder removed in July. I have a great appetite, but 3-4 diarrhea bowel movements per day now. I take Immodium. And also Creon. Not sure if my bowel issues are due to certain foods (high fat, processed, fried) and lack of gallbladder. But from what I've seen, diarrhea is very common following pancreatectomy and can last quite a while, if not forever.

May I ask how much creon are you taken per meal?
Do you have bloating, belly pain, and blurred vision?