Newly diagnosed

[Luke]

Hi I’m new the this site and hope to get some understanding of what I to expect in the coming months.

I have a tumour at the tail end of the pancreas and will have an operation to remove about 30% and also the spleen.

the doctors have given me information from a medical perspective, which seems very grim.

is there anyone on the forum who can give me an idea about what to expect post operation and their experience? 

[Skippy]

Luke as there hasn't been a response I can just say my brother 74 who had no prior symptoms apart from a skin rash, and his diagnosis of PC was only due to a routine blood test (on another matter) He had this operation within 5 weeks of a diagnosis - was 7 hrs in theatre. I was with him nearly daily during his recovery both at hospital and at home. He got through this, and so will you. Dont be afraid. At no time did he complain to me of being in pain. He was well cared for with great attention by hospital staff to all his comforts.

Slight delay in getting his digestion stirring and was on tube food 'bags' a week longer than he hoped and was frustrated,  19th Sept was his operation, by 5th Dec (after being at home, rested and recovered reasonably fit again, sufficiently- he went for his first doze of chemo.

Consultant suggested chemo a must to sweep up any poss left over cancer cells. He coped well with his Chemo too. 

Creon was essential with his food (4-5 tablets each meal (he had been taking only two on hospital release) and suffered with the recurrence of diareah,  but it all went better on increasing the tablets and he was happy, that he had been given the chance of this op. He had no regret on the operation process. 

[Support Team]

Luke, you may be aware you can contact our specialist nurses on our free support line for some guidance. The free

call number is 0808 801 007 with phone lines open from 9am-4pm or submit an email for a response via this contact form https://www.pancreaticcancer.org.uk/support-for-you/contact-a-nurse/.  

 

This must feel like an anxious and overwhelming time so i do hope you will feel able to reach out.

 

Support Team

Pancreatic Cancer UK

[Andrew C]

Hi Luke.  I had Whipple oct 31st 2022. A year on i am now doing fine, I've had two scans since and both showing clear at the moment. Not sure whether you are having whipple, from my experience the first couple of weeks post surgery are not easy, but slowly you are able to move and walk with the help of the nurses and doctors. I was due to come out of hospital after two weeks but started being sick during week two so had to stay while this stopped. This was due to my stomach not working properly, i was told before hand that this is the case with some people, this is the only problem i have had, it probably took 6 months to really get going again, i just had to lay down for about an hour after eating then the discomfort would go. Its much better now. I take Creon with each meal, the amount varies. It takes upwards of 6 months to fully recover, i had 6 months of chemo afterwards, the cancer had spread to my lymph modes, but so far this has sorted that. You will probably have tubes coming out of your stomach area, this is only temporary.

To start with it is difficult but with positivity and the help of the NHS you will get there. I am a plumber and am now back doing work on my terms. I get tired quicker than before, but i am still smiling.

 

All the best.  

[Luke1971]

Hi, Luke. I hope you're getting some answers. I had the Whipple procedure last summer, and six months of FOLFIRINOX chemotherapy which is just coming to an end. I can only describe it all as unpleasant but - in my experience - completely manageable. I've been taking Creon with every meal for eight months. I've only just joined this forum, so apologies that it's a late reply. If you're still looking for answers, do reply to this and I can maybe go into a bit more depth for you.