Introduction/any help appreciated
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Debbie….perfect. Glad you made an appointment with Dr. Selby as well. He has immense experience with this cancer. Great choice for second opinion.
Good luck and please keep us posted.
Hugs
MarionMarion, Positivity and Lainy,
Thanks so much for your advice and support!! My Dad is my hero and although this is the hardest thing I have ever had to face, I am blessed to do what I can and help him through this incredibly difficult journey. This site, made up of caring people who have either faced this situation themselves or helped a love one through this, is so helpful and comforting. Friends and relatives have a difficult time understanding why answers and solutions are not quick, nor easy.
He has Kaiser so we have an appt with Dr Louis Difronzo surgical oncologist Kaiser LA and a second opinion with Dr Selby at USC. So the next two and a half weeks should give us more answers.I will keep you posted and comments/suggestions are welcomed and much appreciated.
Debbie
positivity……there are times when a rise in CA 19-9 markers coincide with tumor progression. That is why the markers most often as used at onset of treatment and taken in account with scan results monitoring the upward or downward trend in response to treatment.
Hugs
MarionGood Questions to ask the oncologist on how often you need the CEA or CA 19-9 tests. My understanding is CA 19-9 test is not a good indicator if cancer has spread. You need this test as well as scans. The level can fluctuate for any reason.
I have heard it takes a few biopsies sometimes to get a confirmation from pathology of a malignancy. It took my mom two ERCPs. Make sure you have the best GI doctor to perform the ERCP as it’s a challenging procedure. They can use special instruments to make biopsies easier. It’s seems routine monitoring using a CT scan or MRI on a set schedule would be more useful to keep track of the cancer or tumor and if it has spread.Dear Caligirl, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the diagnosis of your Dad and that you had to join our remarkable family. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.
Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
As to the possibility of a Whipple at 84, I think it would be up to the ONC. My husband had one at 73 and while it is not a life threatening surgery like heart surgery it is a huge surgery. Teddy would always ask the ONC or Surgeon what he would do if Teddy was his father. Funny I guess but he always got the right answer.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/Please do keep us updated on Dad’s progress as we truly care.
Sorry if I am not posting this in the correct area. Thanks to all of you who have shared your story and those who have given advice and support. This site has been invaluable in helping me understand this terrible cancer. My story: my dad age 84 and extremly active became jaundiced the first part of January 2017. A stint put in but brushings negative. Four weeks later stint migrated, another EUCP and EUS done. Brushings from EUCP negative but biopsy from EUS came back “atypical cells”. Three weeks later jaundiced again, stint migrated again. This time EUS showed a focal mass in the mid to distal bile duct, 18 X 15 mm and surrounding the bile duct. Dr. Stated “likely malignant”. The biopsy not conclusive for malignancy so Dr suggest another EUS with biopsy in 2 weeks. CEA 4.8 and CA 19-9 is 100. Question; how often should CEA and CA 19-9 be repeated? Going to surgical oncologist for consult in 11 days. Not sure if they will do a whipple on an 84 year old. Especially without a positive biopsy. Any insights? Advice on questions I should be asking? Thanks in advance. Your stories have been extremely helpful in understanding this disease and helping understand the frustration that goes along with diagnosis.
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