New diagnosis of CC- so many questions!

Raye, thanks for passing this on. In fact, I had spoken with a physician from Canada who had mentioned the high success rate of liver transplantions performed in Montreal.
herbsgirl….now you have some choices and can go for second and third opinions if you so choose.

herbsgirl….Here are some physicians treating Cholangiocarcinoma patients in Alberta:
medical oncologists: Dr Heather-Jane Au
and Dr Patricia Tang.
surgeon: Dr Oliver Bathe
Good luck and keep up your spirits.
Best wishes,
Marion

Michelle,
Very sorry to read your post, but Welcome to this site. I have two comments/questions.
1. What size is the Klatskin tumor?? ( certain hospitals do liver transplants ( search “mayo transplant protocol for cholangiocarcinoma” on the internet but there are strict criteria and usually the tumor size is 3cm or under.

2. Many times chemo.radiation can shrink the tumor then allowing possible resection. ( although the location of a klatskin is harder because it usually is located where the ducts split.) So keep this in mind.

3. Based on what your doc has said I would definitely get another opinion – there ARE other options and treatment out there. (chemo/rad/microspheres/RFA)

4. you can probably do a search on this site and find other docs in your area..

good luck.. keep us posted
ashley

Dearest Michelle welcome to our amazing Family! I am going to try and keep this short as I know you are having a lot thrown at you in a brief time. Yes, it is very scary/frightening and it will help you to read some of our posts. The more you know the stronger you get. No one can give a time limit as we have patients who were given months and its been years. We believe heavily in second opinions. We don’t believe in giving up or in doctors who do. Honestly you will feel better when you get the right doctor and a plan falls in to place. Good luck and please keep us posted.

Hi Michelle:

Welcome to the best little site on the web that NO ONE really wants to join, myself included!

My husband Tom’s Journey with CC can be read under my login name mlepp0416.

As to your question on how much time your dad really has. Well, no one knows for certain! When Tom’s liver enzymes elevated, it took weeks to get a diagnosis and we finally left the VA hospital and went to a civilian doctor who had a diagnosis with one ERCP! CC was a word that I never know until March of 2008. Tom had his rescection in June 2008 and after a long uphill battle of healing, no chemo and no radiation because his margins were ‘clear’ and he was ‘cancer free’ or so they said.

We had a wonderful spring, summer and fall of 2009 and we no longer worried about Tom and his CC. He was cured. However in late November 2009, in fact on Thansgiving day I thought that Tom looked a little ‘yellow’ and just thought that I was looking for a worse case scenario.

Two days later I asked my girlfriend if she thought he was turning yellow. She agreed. I took him to the ER of a local hospital where he had been diagnosed in 2008. A CTscan revealed a new tumor in the middle of the remaining right biliary tree.

We consulted with his oncologist at the Iron Mountain Michigain VA hospital and he told us it was inoperable, that Chemo and radiation would not work and that he should go home and get his affairs in order and that he has 6 months at the most.

We sought 2nd and 3rd opinoins. And we consulted with his original surgeon who did his initial resection. She agreed with the other doctors in that the tumor was inoperable, however, she thought that with Tom’s and my ‘fight’ that if anyone was a candidate for chemo and radiation that Tom would be the one.

We chose to stay locally for his new fight with CC. Aurora Baycare medical center has the Vince Lombardi (GO PACKERS) Cancer Center and they are wonderful. Because the tumor was totally blocking the liver, chemo was out until they can get the liver stented. All his new doctors now are saying that after a liver resection, even with clean margins he SHOULD have had Chemo to kill any cancer cells floating around and that is standard protocal for their cancer center.

The radiation oncologist that he is now seeing set him up for radiation to hopefully start killing the tumor. His bilirubin level rose to an all time high of 24.7 (normal is less than 1.3). We don’t know why Tom did not have any of the side effects of the high bilirubin levels such as intense itching or brain confusion but we are thanking our lucky stars.! Tom had a minor stroke in 2005 so that may be the reason that he didn’t get any of those side effects (that part of his brain may have been damaged??)

After 28 radiation treatments, Tom’s bilibrubin level is down to 9.1 and we feel it will go lower yet. Because of the placement of the tumor, they were unable to get the stent into his liver, so he has had an external drain for the past two months which is also helping to lower the billy level. Next week they will try to stent the liver internally. (keeping fingers crossed on that one)

On the 16th of Feb, Tom will have 23 months in since his diagnosis. The road has been bumpy and has had many twists and turns. Sometimes we feel like we’re hitting a brick wall. But we always try to keep a positive attitude and we have learned to not take a ‘no’ for an answer! We question every thing and want to know why something can’t be tried or done (and they better have a good reason!)

We fired the oncologist who told Tom that nothing could be done as there is always something that can be done or something new that can be tried. Tom will be 63 on Feb. 11th and we’re hoping that he will have many more birthdays to celebrate. We’re not giving up on this one, and neither should your dad.

Have your dad’s doctors thought about putting a stent into the liver from the outside? Tom’s tumor is 13cm from the intenstine and to do a stent via an ERCP the longest stent that they can use is 14cm else the stent bends and he would need a 16cm stent to get past the turmor. But a longer stent can be introduced from the external chest wall, it’s a dual procedure along with an ERCP. The wire from the inside goes past the tumor and the stent from the chest wall is placed onto that wire and pulled into position. This is the way they are going to place Tom’s Stent next week. You may want to question your dad’s Interventional Radiologists on this type procedure. A longer stent can be used with this technique.

Rather than focusing on the length of time your dad has, focus on spending quality time with him and build those memories, take a lot of pictures! This past Christmas we got the entire family, his children, my children, all the grandchildren and got pictures of everyone! It was awesome!

Remember that no one has an expiration date stamped on the bottom of their feet (or on their butt) and no one really knows how much time on has.

I don’t know of any cancer centers in Canada (but I do know that Canada has some great fishing spots!) Do all the research you can and ask all the questions you can!

Prayers are coming your way from Wisconsin, USA.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret