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Biliary Carcinomas was posted 05/14/2006 10:03 am by mrs
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Welcome to this board and sorry you have a reason to be here. There is a lot similarities between many of the gastrointestinal cancers. I want to share a post written by Mariann whose husband is fighting pancreatic cancer. It has a lot of useful information. I will post it further down.

Blood work can look fine and many times it did with my Dad, but it is in the CT Scans or a specific blood test that the cancer may show up. Even when the cancer spread to a lot of the liver, the liver function blood test was fine. Just not a definite answer to these cancers. Has your Mom had a CA 19-9 blood test? That shows proteins made by the cancer in her blood. Along with a CT Scan these are just two of the main tests done to check for cancer.

Read all you can and unfortunately certain cancers are hereditary. There are several centers, mostly major teaching University Hospitals, that have genetic testing for familial cancer. You have to contact them. Depending on where you live, you can seek out the one nearest you. Do read the information provided in the links when you first enter this site.

Come back and ask questions. Take care........Mary Here's Mariann's post and this also applies to biliary cancers. --------------------------------------------------------

More and more new folks here. As a PanCAN team hope coordinator, it means we have more work to do. I'm going to post this to all of you, as I have received some requests for it again. This is my experience as the wife of a Pancreatic Cancer SURVIVOR and does not necessarily reflect the opinions of PanCAN. I was thinking this morning of the things that we have all learned from each other that I have found valuable. 1. Call PanCAN 877-272-6226 and get a list of EXPERT doctors in your area. Surgeon, Oncologists etc. You need an expert who has EXPERIENCE. 2. The best cancer hospitals in the nation are not necessarily the best Pancreatic Cancer Centers. 3. If you have ductal adenocarcinoma and (99% of cases are) ask about being on a blood clot preventative like Lovenox or Coumadin. This cancer can cause blood clots. (Ralph had a stroke before his diagnosis came in and he is and will be on Lovenox for the rest of his life.) 4. Have an updated healthcare proxy and durable power of attorney done which is Hippa compliant. If you are a caregiver- they are the legal documents that will give you absolute power in helping your loved one navigate through the bureaucratic Doctor office nonsense when trying to get medical records. No one can deny you if you have a power of attorney 5. At each visit, get a copy of blood work, reports and make a medical binder with all information. This is very important especially if bloodwork/test is being done and not accessible via a hospital intranet to all your physicians. Ralph gets all his testing done at Columbia University Medical Center in NY and we get copies of all the cat scans and bloodwork every time we go. All his info is there for comparison every three months and it makes it easier for all to follow his care. We bring copies to the local doctors. 6. If you live remotely to a major center (like we did), network with PanCAN and assemble a local team of doctors who will take direction from your surgeon and oncologist at the major hospital. SOMEONE has to be in charge and you have everyright to dictate where that is coming from. In Ralph's case, Ralph's oncologist in Columbia (Abby Siegel) is the point person and she works with his local hemo-oncologist telling him what regimen to use. He executed her direction so we didn't have to drive to New York. This worked very well when he needed radiation as that was an every day occurrence. Abby told the radiation oncologist what she wanted done and he executed. 7. Call PanCAN ask for a PALS associate and get someone to talk to in the survivor caregiver network. It's free! 8. It's exhausting. Ralph and I found ourselves angry, scared, tired, cranky, and overwhelmed. We needed help because we were in uncharted territory. No one comes into this as an expert about the pancreas. It is something we learned from others by asking questions and reading and learning. It is ok to ask for help. It is empowering for those who are in the PALS network who want to help you. By you allowing others to help you, you allow someone to help themselves. It is a wonderful thing. 9. Don't believe everything you read about pancreatic cancer on the internet. That advice came to me from Dr's John Chabot and Peter Stevens at Columbia. Read PanCAN's literature- the lectures from the symposiums are incredible. That information is viable and very encouraging. 10. For every symptom and problem, we found there is a medicine to counteract it. I asked Ralph's oncologist to write me prescriptions for every scenario that he could encounter. I had Zofran for upset stomach, antibiotics, mouthwash for mouth sores, ambien for sleep, xanax, you name it- she made sure I had it. This way, if something came up, I was not running to the pharmacy all the time. We were able to take care of it right away. Oh and my thoughts on Pain- no one should be in pain. If it does not work, push the doctor to get medicine that will work. Here are some new ones: 11. Do not allow unacceptable behavior from any health care provider. I had no problem telling doctors where the bear crapped in the woods and calling them out on unacceptable behavior as it related to Ralph's care. One Doctor had the nerve to belittle Columbia to pontificate to us her 'Sloan Kettering Degree'. I let her have it and we fired her. This goes for anyone connected with my husband's healthcare. In one instance, I had the CEO of the local regional medical center on the phone because the X-Ray department was refusing to give me my husband's cat scans. Call out those favors that you have never used and people have offered. i got to him through a board member on the hospital who is a business acquaintance of mine. Another instance, I had the Senior VP of HR for his company on the phone because the mail order pharmacy was continuing to miss getting his lovenox to him consistently. she got the provider on the phone and straightened them right out. 12. If you are dealing with adenocarcinoma, please note that it is an automatic approval through SSDI. Do NOT get a lawyer who will try and take money from you. Work to get it approved by providing medical documentation from the ONSET of the illness. In other words...if you went to the doctor for back pain in June, and went through numerous tests etc and were not diagnosed until January...the onset of your illness is June. The qualifier for SSDI is 6months. AND it does not matter if you continued to work while that time was accruing. Ralph worked- and I told the examiner that he tried to do the right thing and work... 13. Set up a web site to keep your family and friends updated on your progress. Kelly Barber, Lois Tibbets and Joanne Edberg taught me this. Our web site is http://www3.caringbridge.com/ny/ralph. Please come and visit- skulk around and sign our guest book. And when you are done, make one for yourself.



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