Stressed, scared spouse & caregiver too.
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Susan, I totally understand what you are going through. Although this is a rare cancer, unfortunately here your situation is shared with many. Actually I should say fortunately as you will not find a better place to be then among this phenomenal group of people. I agree with the others. Take a deep breath and just try to deal with this one day at a time. Sometimes it may have to be one hour or even one minute at a time. More opinions and working with doctors who are very familiar with CC is also good advice. Please update us when you can and know that we are all here to help & support you both in any way that we can.
Hugs,
DarlaI agree with googily. I had to say that to myself a couple of months ago, or else it would be so difficult to endure. “One Day at a Time” It’s tough, but pulled it together to help. Please get a few opinions from oncologists, and you may like to work with one more than another. Genome testing seems to be beneficial, so definitely mention this to the oncologist. Keep going and don’t give up.
Hi there,
I’m so sorry–my husband was diagnosed Stage 4 with bone mets after nothing much beyond just kind of feeling some burning in his stomach that wouldn’t go away. Hard to go from thinking that at worst he had an ulcer to this.
Be sure you get a biopsy of his tumor sent off for genomic testing, to see if he has any mutations that are responding well in clinical trials.
It’s a huge burden for you, to not only be sucker-punched with such awful news about your DH but to now have to be the “general” going into battle. One day at a time is all I can say.
Dear Susan, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about the CC diagnosis of your husband 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 and kind of like being hit in the stomach with a bat. 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. May I ask where hubby is being treated.
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.
I want you to know that we have many patients who were Stage IV at diagnosis and ended up with surgery, our favorite word. What chemo is he on? Please do keep us updated on your husband’s progress as we truly care. Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
My husband & I learned of his diagnosis of liver/bile duct cancer a month ago after his arm broke while getting onto the table to have an MRI of his back. After the MRI, he was taken by ambulance to our local hospital, admitted and had surgery to repair the broken arm. The next week we were seen by the oncologist who rocked our world & not in a good way. We were told that Al has a rare cancer that started in the liver’s bile duct and spread to three areas: pelvis, arm & spine. I remember leaving the exam room & going into the bathroom and crying: Sorrow, sadness, loss, helplessness and fear followed. Ten radiation treatments have been completed on the areas in the bone which were identified by the PET scan. Chemo starts next week.
I can’t get my head around a healthy man with no symptoms of cancer one day to full blown stage 4 cholangiocarcinoma.. I join this discussion to learn.
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