Re : Help needed re whiple for my brother

February 6, 2004

Hello ,

I can understand how much of a dilemma your brother finds himself

in. Ofc ourse, nobody can really advise you or him without knowing

the full medical facts of his case (which I don't, of course) but it

might be useful to share my experience with you.

Have you personally actually been diagnosed with hereditary

pancreatitis, by the way? Has he? Even if he has no symptoms, he

could have one of the known gene mutations. Has he actually been

tested?

I am 58 and have hereditary pancreatitis; at least it is 99+% sure

that I have. My mother died of acute pancreatitis in 1964. She had

been ill for many years.

Well, despite many symptoms over my lifetine, I only got my final

definitive diagnosis of chronic pancreatitis last May. It was a

great shock especially when I was told of the very high cancer risk

attached to my sort of hereditary pancreatitis. I was also feeling

quite ill when I was referred to the pancreatologist in July. He is

a surgeon and specialises in pancreatic surgery. Because my cancer

risk is so high and because I was in a lot of pain at the time. he

was willing to carry out a total pancreatectomy if I wished. He did

not try to push me into it in any way. Well, since beginning my

treatment (enzymes; I take Creon) I have felt much better (though

not pain-free all the time) and, after months of researching, I

decided not to go for the operation just now; it is such major

surgery and somewhat uncertain in outlook. I imagine the Whipple is

similar. at least in that respect.

If your husband has no symptoms, it is unusual to offer a Whipple.

Such major surgery is usually only offered as a last resort when

people are in great pain most of the time.

However, it is crucial to discuss it with your specialist and make

sure you both understand exactly why he is proposing this surgery.

I don't think a Whipple can cause CP (I'm open to correction here)

but I certainly know of people who continue to have pain after their

operation, despite the fact that all, or a large part, of the

pancreas has gone.

Good luck in your researches and keep those questions at the front

of your mind for your doc!

Good wishes,

Fliss

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