Distal pancreatectomy operation

[Lesfleur]

Hi there,

This is my first time posting... I have been undergoing investigations for a cyst on the tail of my pancreas, they have found that it is precancerous and have recommended that I have it removed, so I appreciate I am in a very fortunate position because they have found it early. However, I was just wondering if anyone else had been through something similar? It is a distal pancreatectomy and splenectomy also.

I am nervous about recovering from the operation. I am quite healthy otherwise and active and in my early 30s so know that that is good. I’ve had operations before for an issue with my hand but they were minor day surgeries. I am worrying most about silly things like coming around from the operation and having all the tubes/drips in. I think it stems a bit from my dad having cancer when I was little and seeing him after surgery with all the drips in, and it was terrifying - this is all bringing it back again, and I don’t really have anyone to ask about it.

So i was just wondering if anyone could tell me sort of, how the recovery is, does it hurt having to have feeding tubes and catheters and IVs etc? I know this is a tiny little thing in the grand scheme of everything but it would really help. I think I have developed a little bit of a fear with it all after the nurse couldn’t canulate properly for my CT scan and I kept fainting when she tried; when they then canulated for my biopsy I was convinced I could feel it in my hand, it was so sore and I couldn’t get my mind off it, my head was swimming. I’m naturally a bit of a worrier so think my mind is just amplifying everything currently :/

Thanks

Sophie

[PCUK Nurse Rachel R]

Hi there Lesfleur,

Welcome to the forum on behalf of the Nurses here. I'm sure one of the 'forum family' will soon respond to your post. I am sorry for the difficult time you are going through at the moment and the anxiety you are experiencing. Please do feel able to call or email us Nurses on the support line if you feel this would be helpful, it would be a pleasure speaking to you.

Also can I mention a peer support service that is relatively new to the charity called 'Side by Side'. This helps to support folk that are planned to have or have undergone pancreatic surgery for cancer and also for precancerous cysts, it involves linking a person up with a trained volunteer that has undergone similar surgery. I have a link here to some more information if you would like to take a look. If you did wish to explore this further please do give us a call. Our contact information is on the signature below.

https://www.pancreaticcancer.org.uk/information-and-support/support-for-you/side-by-side/

Best wishes,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[bopeepsheep]

Hi, I'm also new and this is why I'm here - there's a pseudopapillary tumour on my pancreas and I've been told I'm going to lose the bulk of my pancreas and my spleen some time soon. I'm not an expert on this specific kind of surgery, of course, but I've come round from fairly major operations before and it's not been too bad - catheters haven't hurt, the various tubes and drips have been just an inconvenience rather than painful. AIUI we will start out on a drip for pain medication, able to control it ourselves, so you can choose how much minor discomfort you put up with. I didn't like the idea of a catheter in my bladder until I realised how much more preferable that was than getting up to go to the loo - when they did make me get up on day 3 after a spinal operation I really noticed how much I didn't want to do that! And I didn't notice it once it was in there, it's more the idea of it that bothered me. All of these things are there to make your life a little bit easier post-op, so perhaps thinking about it that way will help?

[Desso]

Dear Sophie,

I don't think you should worry too much. I had distal pancreatectomy to include removing the spleen 18 months ago due to pancreatic cancer. I am 53 and recovered pretty fast. Removed the stitches after 2 1/2 week, and was actually swimming in the ocean the week after. No heavy lifting for 8 weeks, but I was back on my mountain bike after 6 weeks. I had some pain after waking up after the surgery, but there are a lot of good painkillers thees days. I lost some weight after the surgery, and I think it took some time before my digestive system were 100% up to speed again, but after a couple of months I was back to normal weight. Surgery is scary, but you will do fine. I had some drains from the operation wound for a week or so, the main reason is to check that the pancreas is not leaking enzymes. I dont think there normally is a need for feeding tubes, and catheter was no issue even for me as a male. All in all it was not too bad, and much easier than I feared. Best wishes with your surgery.