What's recovery after distal pancreatectomy and splenectomy like?

I’m currently doing radiation for 28 days at Mass Hospital in Boston. My medical team of surgeon Dr. Fernandez radation doctor Dr. Hong had said they had great success with having radiation prior to surgery. I was wondering who you saw at Mass General and why they opted to do radiation after surgery. Hope you’re doing well.

They were not able to get a good biopsy of my tumor so it was not possible to determine whether it was adenocarcinoma or a neuroendocrine tumor. The surgeon felt that it was the later based on the MRI and suggested removal. The pathology post surgery indicated that it was stage 3 adenocarcinoma. Therefore, I had chemo and chemo/radiation after surgery. Dr Hong is also my radiation oncologist. The chemo/radiation is designed to kill any remaining cancer cells left at the surgical site as well as lymph nodes and blood vessels. My CA19-9 has been under 10 since starting chemo and both a CT Scan and MRI at the conclusion of my 12th chemo cycle are clean. Dr Hong told me that I could opt out of radiation. However, the data indicates that adding the chemo/radiation improves long term survival rates. After going through 6 months of folfirinox I figured I’m all in at this point and would like to see a cure. I trust Dr Hong. I assume that you had chemo and radiation prior to surgery? That is the recommended protocol but unfortunately in my case because they could not get a good biopsy I had surgery first. Hope that provides clarification. Also hope that you’re doing well. All the best for the Holidays and New Year.

Thanks for your reply. I also trust Dr. Hung and with my cancer he suggested they have great results with radiation before surgery. I had 52 chemo treatments at Lowell general hospital before my oncologist suggested surgery. I looked for hospital that has done many pancreatic surgeries and that where I found Mass general and Dr. Fernandez who has done the most in New England. I have a rare form of Pancreatic cancer called Acinar.

I probably said this before but going through 52 cycles is unbelievable. You’re a trooper. Prayers for continued good health for you. Happy Holidays. Enjoy.

Thanks.

I got lucky. was able to have spleen and part pancreas removed and it was found not to be malignant. Miracles do happen - just everyone keep positive. Its in the hands of a higher power

Hello,

On December 13 I had a distal pancreatectomy with preservation of the spleen for an insulinoma in the body of the pancreas. When I introduced the food, my body has accepted the liquid and soft diet well, but I am having problems with the diet that includes meat or fish, since I notice that it is difficult for me to digest it and I have a feeling of fullness. I would like to know if this could be something temporary as only 9 days have passed since the surgery or on the contrary I will need to take enzyme supplements for life.

Thank you, best regards,
Carlos

Hello @csanjurjo and welcome to the Pancreatic Cancer support group on Mayo Connect. You are asking an important question about an eating plan post-surgery.

Here is a discussion that your might find helpful that deals with foods after pancreatic surgery.
https://connect.mayoclinic.org/discussion/foods-after-pancreatectomysplenectomy/?commentsorder=newest#chv4-comment-stream-header
It does take time for your digestive system to recover from surgery. While I've not personally had pancreatic cancer, I have had three surgeries for a rare form of cancer in the upper digestive tract. As a result, I understand the need for meals to be small and more frequent.

Did your doctor provide you with any diet plan before you were discharged from the hospital? If not, a call to his office might be a good idea right now. I'd like to invite other members of Connect to this discussion such as @c2pricorn66 | @jk77 @markymarkfl @mnewland99

Outside of the feeling of fullness with fish and meat, how have you been feeling since your surgery?

Hello Teresa,

Thank you very much for the quick response.

The doctors told me that I didn't have to follow any type of diet, but right after I was discharged from the hospital, that's when I started to notice a greater feeling of fullness and lack of appetite. I have some pain but not too much and i feel very tired. I am 37 years old.

It is true that I am not having significant diarrhea (level 5 in Bristol stool scale) and I have not seen any floating or greasy stools, so you are probably right and it may have more to do with the postoperative period than with the lack of ability of my residual pancreas to generate enzymes. I will discuss it at the check-up with the surgeon to see what he thinks.

Thanks, best regards,
Carlos

On my CT scans the pancreas was atrophic and has continued to be. Creon seems to be for life. Stool can be tested for fat. After surgery I just could not eat as much. I was only 103 lb (110 before surgery) and not recovering well from surgery. My doctor started talking about a feeding tube. I started watching the clock and eating every 3 hours. Now I am six months after surgery. If I wait until I was really hungry I just could not eat enough to satisfy hunger. I still keep an eye on the time. Now I can eat more and go longer between meals which is helping me to "get a life again". I have been working on increasing my dose of Creon. At 36,000 three before meals, I have been having less difficulty with gas. Gas was certainly interfering with "getting a life" since smelly gas is not socially acceptable. I have been working with a great hepatobiliary dietician at Sloan Kettering Memorial Cancer Center. can highly recommend having a dietician who is knowledgeable about cancer treatment. A hepatobiliary dietician is really "icing on the cake" and one of the benefits of being treated at a top of the line cancer center

@jamilynne is it ok to ask when you had your surgery done at Mayo?