On Friday
29th January 2016 at 11:30am we met with Tom Cecil, Ben Cresswell
and Vicky Evans. As we entered the meeting room I felt I was taking my first
tentative steps into the frozen wasteland that is 2016. Testing the ice
carefully to see what the immediate future may hold?
We knew
going into the meeting that the scan in August had shown two areas of concern.
One on the right kidney that had not changed in size since the scan the year
before and another that had grown and was situated around the porta hepatis,
close to the bile duct and pancreas.
Some
discussion had previously been had about the possibility of another operation. Correspondence
suggested that there were a couple of procedures that could be done; either the
excision of the bile duct or a Pancreatoduodenectomy. Both options are considered
major surgery.
Surgery to
remove bile duct cancer is often done in two parts. Portal vein embolisation
(PVE) is a smaller procedure usually done a month or so prior to a resection or
hepatectomy. As the liver is the only
organ that is able to grow back this procedure aims to shrink the area affected
by the cancer which in turn encourages the healthy part of the liver to grow
further and compensate thus preparing the way for second surgery which may involve
removing affected areas of the liver (lobectomy).
A Pancreatoduodenectomy (Whipple procedure) is
major surgery. The surgeon usually removes the bile duct containing the cancer,
part of the liver, the gall bladder (mine has previously been removed) and
nearby lymph nodes. Part of the Pancreas and small bowel may also be removed.
The aim is to get a clear margin of tissue around the area where the tumor was
found. There are also a number of major arteries located in the area that must
be avoided.
Any operation would be considered a “trial dissection”
in other words if when opened up the
surgeon didn’t like what he saw then he may take the decision to simply stop
and sew me back up again.
After a
long discussion regarding the options we agreed that for now we do nothing.
Another CT scan will be booked for April along with bloods and we would see
what the results tell us.
There are a number reasons for coming to this
decision-
Firstly, whilst there are areas of concern
that appear on the CT scan my CA19-9 (tumour markers) remain normal. It is
possible that what we are seeing on the scan isn’t actually Psuedomyxoma and
possibly scar tissue or other abnormalities. Tom Cecil likened it to “chasing
shadows”.
Secondly, as stated above the operation
required is big and not without risk. Only a few previous operations have been
done, all had a complication of some sort or another (but it’s good to hear all
patients are now doing OK). The most common complications include; leakage of
bile, fistula, liver failure, infection, bleeding and heart problems. There are
also a number of possible side effects including diabetes. There is also “the
potential for significant morbidity and mortality”, it’s not a decision to be
taken lightly.
Thirdly,
right now I’m very well and keeping fit. I am suffering no ill effects and my
quality of life is good. There is a chance that even if this is a reoccurrence
it could remain stable for several years before requiring intervention.
So for now
we have a reprieve pending the results of the scan in April. Then I guess we
revisit the above all over again.
I have spoken to a number of friends and
fellow PMP survivors since the meeting. The common thing that they all say is
that they feel the outcome was a good result. I guess it is but from where I’m
standing I’m not really sure. Yes, I don’t have to have any surgery in the
immediate future. Yes, there is an outside chance this may not be a reoccurrence
(although I’m not convinced). But I can’t help thinking that if this is
Pseudomyxoma, if it is a reoccurrence then the longer it sits inside of me the
more chance there is of it growing and spreading. What if it reoccurs somewhere
where there is no surgical option? I guess this is the thin ice on which I
walk.
A close friend said that the Whipple procedure
sounds like something to do with ice cream! I now have this image in my head of walking
into the next meeting with Tom and Ben and if we decide that I do have to go
ahead with the Whipple procedure then I respond with
“In that
case can I have it with strawberry sauce, hundreds and thousands, a chocolate
flake and a great big dollop of clotted cream on the top”!
Steve, I
just know I’m ‘gonna have a fit of giggles at my next appointment, thank you!
Oh, and I
was driving home last week listening to Frank when this song came on, made me
smile, think it’s going to be my new Pseudo theme tune! Enjoy...
