Saturday, 6 February 2016
Friday 29th January 2016- A Meeting at Basingstoke.
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...