Pancreas Vs. Liver Cancer - Primary Site Or Metz

Several weeks ago I wrote regarding pancrease cancer as it pertains to my mother. We have not yet had any success in determining whether the cancer is "pancreatic" or where it is. Drs. can't seem to find the primary site. However, all they are sure of is that she does have Metasasised liver cancer. We are on our way to Cleveland Clinic tomorrow for a 2nd opinion and hopefully some answers. To me it seems it would matter where the primary site, but to the Drs. so far they don't seem too concerned. Any ideas why? If it has metzed to the liver does it not matter anymore? Wouldn't they need to know where it is coming from in order to try to treat it. Right now my mother is without hope as her insurance company declined to allow her to go to the Cleveland Clinic, but just today she rec'd a notice saying she was authorized for 1 visit. That is at least some hope for her. I know there must be thousands of people going thru this, but how do you get answers. It seems all the Drs. want to say is there is no cure and leave it at that. I am hoping the Cleveland Clinic will give some information to us to at least know where this is going. Unforunately the Cancer Centers of America were unable to help us as they did not accept her insurance but gladly gave me several #'s I could call. It seems we are on a road to nowhere but have not given up and keep hoping and praying that God will stay with her on this journey.

I cannot stress enough how you need to make sure the insurance will pay for somewhere (and more than one visit) to somewhere other than Toledo. We went to a surgeon in Toledo in Dec. and she told my father to go home and die. She was backwoods and knew nothing. We went for another opinion - Thank God we did. Now after 6 months of chemo (5FU and leucavorin and avastin) at Ohio State University/James with Dr. Ahmed Ghany (AN AWESOME ONCOLOGIST) my father had surgery at the University of Pittsburgh Medical Center - they removed the primary tumor in his colon by taking out 1 foot - they really had trouble finding it though after the good job the chemo did.
We knew it was also in the liver and that is why we did chemo first before surgery - to get as much to the liver asap....surgery on the colon first would have delayed the chemo - the colon is always able to be gotten - but you can't delay those metstasized sites. Dad had a liver resection at the same time as the colon removal - 60% of his liver was taken out - they also took out his gall bladder and his appendix. He is doing super. Tomorrow (6 weeks postop) we begin clean up chemo even though all lymph nodes were clean - just to be sure. Dr. Geller and Dr. Schraut (liver and colon respectively were AWESOME at UPMC).

We had to fight insurance the whole way - but what a great fight to win. Appeal to them - ask, be nice, beg - you are literally fighting for someone's life - help them understand that!

STAY POSITIVE. BE AN ADVOCATE - you're the key in this fight....so give it your all. You will never be sad you did but you may be if you don't.

Keep prayers and positive thoughts coming your way - they all help in this battle.

Thank you so much for your encouragement. We are not giving up and will continue to try. My mother is a fighter. I work for an nsurance company and at this point I'm almost embarrassed to be affiliated with it as a profession.

Everything we have learned is been from the internet and investigating. Drs. have not been helpful as of yet with any positive feedback or recommendations.

This is a battle and I hope someone wins it. Glad your family has.

Thanks for the hope.

...I, too, work for an insurance company....it makes you appreciate the good care when you get it, but I know it is rather disheartening to be part of it right now.

You will find a doctor that will work with you, be positive and realize the large part all that plays into the treatment and success of the medical side of things.

Best of luck! Keep it up...it will pay off!

My husband has pancreatic cancer that mestastizied to his liver. I do a lot of research at emedicine.com. You can find out a lot there. Good luck and God Bless
Letty

My husband was originally diagnosed with pancreatitus/pancreatic cyst. They performed the biopsy on the liver via the guided CT, and also performed a abdominal CT Scan. The CT scan showed small growth in the liver, lymph nodes, and a large mass in the pancreas (head of the pancreas). They started him on Gemzar and Xeloda -- they said that it has been effective for both the liver and pancreatic cancer. Besides the tumor markers for the liver, there are also tumor markers for pancreatic cancer -- the blood test called CA-19-9 (Cancer Antigen 19-9)...See www.labtestsonline.org/understanding/analytes/ca19_9/glance.html for details regarding the CA 19-9. They usually test for this when they think that it may be coming from the pancreas -- check with your doctor to see if this test has been done. It's good to get this test done, as they can compare the markers throughout the treatment to evaluate the effectiveness of the chemo treatment plan.

My husband has been on Gemzar and Xeloda since the end of May 2005. Three weeks ago they did an ERCP and placed a stent in his bile duct to keep the bile duct open as the tumor was pushing on the bile duct, and not allowing the fluid to flow properly. Since the stent, his ALT Phos/AST levels have dropped. He receives a "theraputic paracentesis" weekly to remove the fluid build up in the abdomen (ascites).

Please see my message posted in "Advanced Stage Expectations" for pancreatic cancer information/resources.

Please keep in touch and let us know how things are going. Keep up the hope.

Thank you so much for the information. Every bit helps to understand this terrible disease. Thank you so much. This message board has been wonderous for me and gives me hope.
Thank you

Thank you for the info. The treatment discussed is Gemzar for my mother as well. I'm hoping she can hold on and be strong. The only place they have found any cancer is the liver to date. Drs. are unsure of the primary site. One Dr. said it doesn't matter since it is in the liver, another said it matters due to the treatment that may be effective in potential reduction of the tumors 25% - 40% or sustaining it at present. I am hopeful we will be able to obtain some answers and at least give my mother some peace of mind. It bothers me that the Drs. have not touched on the emotional side of this. Each time mom leaves the Drs. she just says "I guess I'm not going to die next week". Believe she feels this way as everything is so unknown for now. God, family and her strength will hopefully lighten this burden on her.