Total Pancreatectomy, splenectomy, bile duct and part of the Duodenum removed

[Gertie]

Looking for someone who has been through the above to be able to ask questions of.  This is what has been recommended by a surgeon that I have.

I understand some may not want to reply, but it would be very much appreciated to find out more.

Thanks Gertie

[PCUK Ellie]

Hi Gertie - hopefully someone with personal experience of having a total pancreatectomy will respond soon, but in the meantime I wanted to pop details of our Side by Side service here in case it's of benefit to you or anyone else reading.

 

Side by Side is a service run by Pancreatic Cancer UK that can connect you to a trained volunteer who has had pancreatic surgery themselves. 

 

You can have a confidential chat on the phone: hear about their experience, ask questions, and gain support and reassurance from someone who has 'been there' and knows how you might be feeling. If this sounds like it'd be helpful, you can find out more here: www.pancreaticcancer.org.uk/support-for-you/side-by-side-support-for-before-and-after-surgery.

[VivC]

Hi Gertie,

I was diagnosed in March, and am hoping to have this surgery, but am having chemotherapy first to shrink the tumour as it was too close to major blood vessels. The surgery sounds really scary, but seems to be the best solution by far. Good luck x

[Gertie]

HI Vic C

Thanks for that and nice to hear from someone. Just catching up having had a weeks holiday.  (ha ha) feel as though I need another one.

I agree it sounds scary.  Have a recall scan this Sat 4th Sept, can't say I am calm, can only see what they say after the scan.

Good luck to you as well.  If you cam keep in contact.

Gertie

[VivC]

I am still having chemotherapy,  last scan in September showed some anomalies which needed investigation. Unlikely anything will happen before the New Year, but looking into SABR as an alternative to surgery .

Did you have surgery?