Looking for Direction
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Thank You Gavin. I too am sorry to hear about your Dad. If I can ask a direct question; what kind of results did you experience with PDT?
We are innundated with “options” some seeming credible and others seeming ridiculous and do not know how to Wade through (we have preliminary meetings with oncologists in 2 weeks and want to beable to ask questions about alternative treatments in an attempt to have the cart lead the horse – if you know what I mean)..
Hi there,
Welcome to the site although I am sorry that you had to find us. And I am very sorry to hear of the news that the tumour was not rescectable. My dads CC was also diagnosed as inoperable due to it’s location being too close to the portal vein. His doctors thought his best treatment option was Photodynamic therapy, PDT which he had. But we are in Scotland and that type of treatment is done more frequenty here in the UK and I am not sure how much this is done in Canada. Hopefully others will be along soon with more information regarding possible treatment centres and options.
I hope you will keep coming back here as you will get a load of help and support from all of us here. I know how hard this diagnosis is to hear having went through it all with my dad, but please try and stay as positive as you can. And feel free to ask as many and all questions that you might have and we will all do what we can to help.
Best wishes,
Gavin
I also suffer from PSC and UC and developed the CCA as a result of the prior. It is good news that the tumor is located where it is as opposed to being a Klatskin type tumor.
You have one good option that you should consider if the cancer has not spread: transplantation. It is not well known and it has great success rates for the people that make it through the protocol. Blood vessel invasion should not prevent the transplant surgery and I can’t see where some scarring would either. There is a section on this website that is now devoted to transplant and there are a few folks listed down there that you can contact for more information. I’m not sure what centers in Canada do this, but I know that one member ended up going to Mayo Clinic in the US to have his transplant done and I’m not sure if the health system covered that cost of if he ended up paying some out of pocket. His name is Raye and he could be a of a lot of help considering he is Canadian as well.
Good luck!
Rick
Oh my, I am so sorry to hear this. My husband had a Whipple almost 5 years ago and is now 77. Mmmm Just for the heck of it, I don’t know what would be involved from Canada but Mayo Clinic in Rochester MN would maybe take a look at his records and confer with you. They are excellent. Also we have Raye and DonnaH from Canada and I am sure they will come on with some information. Teddy had his Pancreas destroyed by the dye that leaked during the endoscopy but after 3 weeks he was able to continue with the Whipple. His was in the same area but all was successful for the time being anyway. Wish I could be more help but I know you will hear from others soon. Good luck and good thoughts coming your way.
My friend is here in in Ottawa Canada and suffers from PSC (primary schlerosing colingitis). He has always been otherwise very healthy, and the colitis and PSC were controlled well with medication up until last summer.
His doctors in Ottawa, ON decided his first stent was required (to keep the bile duct open) in September of last year, just before his 41st birthday. The ERCP resulted in a case of severe acute pancreatitis, and he spent nearly a week in ICU with respiratory and kidney failure.
Herecovered very well from this, and was released from hospital after about 6 weeks, with dialysis required for only about 2 weeks after.
Later towards December, the medical team began to look more closely at the reason for the blockage of the bile duct, and discovered a dominant stricture, suspecting that it might be a cholangiocarcinoma. The suspect tissue is located low on the bile duct, close to the pancreas.
He had 3 biopsies over the last few months, with none resulting in a positive diagnosis – the most recent results came on March 29th – and the sample cells were determined to be “highly suspicious” for endocarcinoma.
A Whipple procedure was booked for last Friday April 16th. We were warned of 2 possible complications: 1. That there may be too much scarring from the pancreatitis to access the area, and more worrisome was 2. That the “tumour” might be involved with a main blood vessel (i.e., portal vein).
Unfortunately we received the worst news possible on Friday. The tumour was not resectable due to both of the concerns above. And a biopsy taken from the lymph was positive for adenocarcinoma.
We are looking for an innovative, aggressive treatment that could overcome the difficulties the surgeon encountered during the procedure.
Welcome, SSHamilton, to our wonderful family. Actually since CC reacts different with everyone the best place to start is at the beginning. Look on line and in our past posts to educate yourselves as much and as quickly as you can. If you go to our search engine at the top of the page and type in what you are looking for you will gets tons of past posts on the subject. Make sure the doctor in charge has had experience with CC. Remember that you are entitled to second and 3rd opinions. I know the thought of reading through things sounds insurmountable right now, but honestly to be for warned is to be for armed. Once a plan is in place you will all feel better. We do have success stories but this is a tough one with lots of hills and valleys. Keep a strong, up attitude and I just know you will soon be hearing from others soon.
Can you tell us more about where the CC is and what the doctor suggests. Also where do you hail from? Looking forward to hearing some more along with progress.
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