Chris/tumour marker tests

[Guest guest]

Hi

I DO NOT think you are prying! I really appreciate people's concern.

I spoke to Prof at the end of our discussion on Wednesday about

monitoring for panc cancer. We had already talked about it before at

both my previous meetings and I'd also discussed it with the gastro.

They were both certain that no really accurate way of monitoring

exists.

(1) CT scans : not certain as the pacreas is in such a mess. A tiny

tumour could be missed. I forgot to ask about the MRI scan but will

do so when I see the gastro in a couple of weeks.

(2) Pancreatic enzymes tests : not certain as the changes which are

consistent with cancer are also sometimes present in non-cancer

cases and sometimes do not occur where cancer is present. Prof has

looked very closely at these tests.

(3) Blood tests as tumour marker tests : not totally accurate.

There will be abnormalities in my results anyway.

BTW, in England they are wary of doing many CT scans because of the

very small risk of exposure to radiation. The usual recommendation

is no more than every 12 months. I know this is a difference between

the US and Britain. I've talked to friends who have relatives in the

US and are amazed at the different approach to scanning betweenthe

two countries.

However, Prof is happy to arrange another scan for me now (my last

was in March) and is also arranging the tumour marker tests. I do

believe him when he says there are no completely accurate tests

because he has done so much work on pancreatic cancer, has published

a lot about it, including articles on monitoring and testing for it.

He knows it will make me feel better anyway! I'm going to ask my

gastro for more details on these tests when I see him in a couple of

weeks. Prof should already have ordered them.

I haven't made up my mind about the surgery. Prof has not in any way

tried to push me either way. Usually TPs are only done for really

intractable and constant CP pain. That isn't quite my case at the

moment. I do have very painful episodes but I also have a lot of

pain-free time and am still working. It tends to go in spells or

stages when I am better (say 80 - 90% pain-free) and times when it's

nearer 50%. Over the last two or three years it's been getting more

severe and more frequent but the attacks are not as bad or as

frequent as in the 1980's when I had what I think could be called

sub-clinical attacks which were dreadful, with terrible steatorrhoea

and weight loss. I have never yet had acute pancreatitis which

landed me in hospital. Now my panc has gone completely, atrophied

and full of calcifications throughout. I've had attacks of one kind

or another since I was 5......52 years ago!

Anyhow, Prof has also done a small number of TPs on patients like me

who asked him to do the procedure because they could no longer live

with the cancer fear. If you are very high risk he will do the op.

They seem to be very happy and grateful to have had it done. He uses

a new method which preserves the spleen and duodenum. Obviously you

also hope to have a significant drop in pain or be totally pain-free.

He thinks I have a good chance of that happening....but no

guarantees.

As you know, he gave me his own article which details the operation

and its effect on 19 particular patients, 5 of whom had hereditary

pancreatitis. He is brutally honest (known for it!) and has shared

all the risks of whichever course I choose to take. The kind of

complications which can occur are all documented in his article

which is an accurate record, of course, of what happened with these

particular patients.

I'm still thinking! The doctors I know (I mean my GPs and a couple

of personal friends) have advised me to have the operation but most

ordinary doctors know nothing about pancreatitis! Prof's nurse in

the clinic told me after my appointment that she thinks I should go

for it; that's probably because she has seen so many cases of panc

cancer in his clinic and also has tremendous admiration for his

knowledge and his surgical skills. She's very knowledgeable

about pancreatic matters. I also know that Prof has successfully

treated patients who had been given up on by other docs.

I'm still thinking!!

I've gone on and on and on.....! Sorry! Not an easy decision!

Very good wishes and thank you! Pry as often as you like!

Fliss

[Guest guest]

Please do not rely on Tumour marker tests CA19-9 is not accurate

when you are suffering from Pancreatitis, We have just spent the

last 3 months out of our minds due to one doctor relying on these

tests Husbands counts were in the thousands, when retested 3 months

later they had dropped to 300 quite a difference.

We went to hell and back in the 3 months as the one doctor was 100%

certain huby had an advanced cancer of the pancreas and whatwas

showing on the CT and MRI scan is in fact a huge cyst and not a

tumour.

We had told all the relatives that hubby had cancer and we had

resgined ourselves that hubby would most probally be dead within a

year as the doctor had told us.

If we had not seen another doctor who knew about Pancreatitis and CA

19-9 cancer markers and Pancreatits effect on them we would still be

living in limbo.