Surgery

[Guest guest]

Hi,

Just adding a note to Heidi's about the choice of having surgery or

not.

Like Heidi, I have extensive calcifications throughout my pancreas.

In childhood and youth I had....presumably....inflammation of the

pancreas which caused those bad attacks of very severe and

debilitating uper-abdominal pain. I'm not sure of the exact cause of

the attacks.

In 1988 a CT scan and ERCP showed no calcifications although it did

show that the panceas was probably slightly atrophied already. Yet

in 2003 the CT scan showed that extensive calcifications had

occurred as well as atrophy. Nothing else was mentioned but stenting

was never suggested so I guess my case became pretty much like

Heidi's except that I have had no pseudocysts to date. The docs

expect diabetes to happen quickly some time soon.

A TP was mentioned as worthy of some consideration. This was for two

reasons :

(1)My level of pain was high and frequent. I was considered a good

candidate for reduced pain following surgery. (There are absolutely

no guarantees though.)

(2)I have hereditary pancreatitis and therefore am high risk for

developing cancer over the course of a lifetime (up to age 70). The

risk increases with age. Obviously, if the pancreas was removed, I

would no longer have that particular risk.

I did seriously consider this operation but was finally deterred

because :

(1) My new regime since definitive diagnosis has helped. This means

taking Creon with every meal and snack, following a very low fat and

bland diet and cutting out all alcohol. My pain level dropped and

the frequency of attacks became less. (Being coeliac I also have to

continue to follow a gluten-free diet as I have done since 1988.)

(2) The docs think it is very possible I am near total burn-out

although I am not yet actually diabetic. My glucose tolerance is

impaired but I haven't reached the stage of needing treatment. As

Heidi says, total burn-out, though frequently never reached, does

tend to mean no pain or a lot less.

(3) They are working on improving the monitoring for cancer and I'm

part of the research project at Liverpool looking at precisely that.

I know they're not there yet, especially in a case like mine where

the pancreas is so abnormal that it is difficult to pick out early

tumours, but they are working on it (mutational analysis following

pancreatic juice collection at ERCP)so I suppose I hope this

research will develop results reasonably quickly. I am not starry-

eyed or naive but I just feel at least something is now moving.

Progress has been made even since 2003. USA docs are working on same

thing of course, eg. Pittsburgh.

(4) The TP would mean immediate diabetes (no ICT done in

Liverpool...in any case, I would have too few islet cells to

transplant, in all probability). If I were already diabetic I might

have felt differently. My gastro pointed this out as a very real

factor to consider. He was right. I have had two reasonable years,

with pain mostly manageable, and still without diabetes to contend

with as well as the CP. When I become diabetic, I may reconsider.

(5) The TP is very major surgery. One has to weigh up the benefits

in any particular case. Overall, it seems that, IF the condition is

being managed reasonably, without too much severe pain, it might be

sensible not to have surgery. I have to say that, if my regime stops

working and I go back to the level of pain I was going through in

2001-3, I shall at once reconsider the TP, especially if I do

develop full diabetes. I would have less to lose, as it were.

It isn't really predictable what will happen in this respect.

As has been said, surgical options vary according to the type of

pancreatitis one has. Medical management can be better for some

patients.

With very good wishes to all of you,

Fliss (UK)