Continuing care after Whipple

[suef]

I had a Whipple in February to remove a cyst from my pancreas. The cyst turned out not to have become cancerous but was close to it. The surgeons removed the head of my pancreas, 30% of my stomach, my gall bladder and various other bits and pieces. Because I work in Belgium, I had the operation at a hospital in Brussels. Now, as part of the continuing care, I will have one or two MRIs and appointments with the main surgeon every year for the rest of my life plus any other care that turns out to be necessary. When I retire, I am thinking of returning to live in the UK. Can anybody give me an idea of what level of care I would get there?

I find this forum very useful, especially the recent discussions on enzymes. I take 6-7 Creon Forte pills each day and find they help me digest most things!

Suef

[volmod]

Dear Suef: Congratulations on your Whipple’s, we wish you well. Glad you find the discussion forum useful. As for your question about continuing care, here’s what some people who have been there had to say - hope this is helpful. Warm regards, Vee

It’s difficult to generalise about post-Whipple care in UK and delivery via the NHS which can be variable according to location/consultant team. Our experience suggests a protocol which indicates routine scans/blood tests on a 3/6-month basis immediately after surgery. This testing period would likely then move on quickly to routine annual testing and within 4/5 years or less the routine annual testing usually ceases as patients then generally get 'signed-off'. Scans may be MRI or more usually CT, depending on the centre/consultant.

Non-routine testing should not normally be affected, depending on the GP/consultant's advice.

Patients treated in the private sector may be able to continue the routine testing /scanning process beyond the usual five-year period. This may depend on their consultant's opinion of the patient's needs/requirements and willingness to fund treatment themselves. There are also organisations that will carry out scanning/testing separately.

We have not heard of any issues with the availablity or prescription of Creon or other such drugs in UK which are currently provided free of charge to the over-65s (and some others) nor in receiving follow-up treatments if this is prescribed.

Given the variability thoughout the UK, it might be wise to contact your UK GP to determine the level of care you would expect to receive on returning/retiring to the UK. It’s also worth noting that the UK is going through a period of cuts and reassessment of services/care provided by the state (which we are assured will not affect health services though we cannot be sure of this at the detailed local level).

If you’d like to talk to/be in touch with someone with personal experience of post-Whipple care or use of Creon, please email the PCUK support line: support@pancreaticcancer.org.uk

[suef]

Dear Vee,

Thank you very much for this very useful information, I really appreciate your help!

Best wishes,

Sue