October 18, 2016 at 9:28 pm #91753helpformom2016Member
My mother has been and still is asymptomatic with 1 liver mass and small mets to spine and skull base since diagnosed in June.
Her LFT is elevated due to the chemo but she is otherwise ok. (Completely not touching on the chemo symptoms when I say she is ok)
But symptoms from her cancer? Not there. Never really were.
When will they appear? What will this progress as? So many unknowns. It can feel like despair. I have found trying to look at the great unknown with as much positivism as I can.
xoxoxo RebeccaOctober 12, 2016 at 8:29 pm #91759googilyMember
Your feelings are absolutely valid–it just makes it seem that much more unreal to get a diagnosis like this and not be feeling it.
But as others have said, don’t focus on the numbers. Focus on how you feel. My husband, like you, now feels all but normal except for chemo fatigue. His oncologist (who admittedly sometimes seems a bit bewildered by it) keeps saying, “Well, you look good, so I’m going to go with that.”
And, also as has been mentioned, if you can get yourself to one of the comprehensive cancer centers with a lot of cholangiocarcinoma experience, it will be an immense benefit. You should also be sure to get genomic testing done on your tumor, to see if you have any mutations that might currently be targeted by clinical trials.
And keep reading these boards, using the Search function liberally to find others with similar diagnoses to yours, and how they are doing.October 12, 2016 at 12:12 pm #91754middlesister1Moderator
Welcome to our group. Although you must be over weekend right now, please know that the survival statistics are averages and do nit account for many new treatment options that have only been offered in the past few years. It is very important to find a treatment center which has expertise in thus rare disease. My mother was told 1 year and chemo would give her 3 additional months. We are now over 3 years since diagnosis. Don’t give up hope.
CatherineOctober 12, 2016 at 2:42 am #91755debnorcalModerator
I am sorry that you are dealing with this horrible cancer, but very glad you found us. This discussion board is filled with knowledgeable, compassionate people that can help guide and support you. I agree completely with the advice given above by Marion and Lainy, and I agree with Joe that you are very brave.
I hope you will return to our site for advice, and please keep us posted on your progress.
DebbieOctober 11, 2016 at 9:07 pm #91756jpmskiParticipant
That’s sucks, I’m sorry. This is a very brave thing for you to post.
Even though it’s the cause of confusion, I am glad for you that you are asymptomatic. My mother had every symptom in book, and she still struggled with something similar. It’s a cliche but true in her case, she was never sick a day in her life. And her mother of 97 was still alive and sharp as tack. This was the source of her confusion.
Just the other day I came across one of the last articles Roger Ebert wrote, and it was comforting to see someone have a contemporary and usable philosophy to life and death, at least to me. I can’t say I understood entirely where he was coming from, but the point to me was that he’d thought about it and he knew where he stood. Which I am envious of.
I am pulling for you.
JoeOctober 11, 2016 at 8:41 pm #91757lainyParticipant
Dearest Iamrebecca, you certainly are and you have the means to find out that you also will stay Rebecca. We have had members diagnosed in much the same way and after 2nd, 3rd and even 4th opinions treatments have been found to help. Different ONCs can see things differently and I highly agree with Marion to see what others say. Gather your LABS and test results to take to others for their insight. It is time to put on your pink boxing gloves and let the fight begin! Please keep us posted on what you find out as you are not alone here, we are one big family.October 11, 2016 at 7:46 pm #91758marionsModerator
iamrebecca…. welcome and a big hug to you. Please don’t despair as no one has an expiration stamp on their foot. Many people outlive their predictions and many are here to talk about it. Take a look at this thread: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=15293
Similar to you, many are asymptomatic when diagnosed. Now is the time to put on your boxing gloves and fight this cancer.
First and foremost, obtain a second professional opinion from a center “very” familiar with cholangiocarcinoma. You want your case to be evaluated by a tumor board which is comprised of: surgeon, radiation oncologist, gastroenterologist, pathologist, and an oncologist.
I like to compare this cancer to that of a chronic disease in that (at present) this cancer is only curable with surgery, but most often it can be treated and retreated with various protocols. Additionally, numerous clinical trial are available for enrollment and immunotherapy is taking on a great role in the fight of this cancer.
There is hope, dear iamrebecca, please don’t despair. We are here to help you work through this.
Let’s see what others have to say as well.
MarionOctober 11, 2016 at 6:50 pm #12226iamrebeccaMember
I am having a hard time accepting the fact that I am dying.
Background to my diagnosis (Stage IV cholangiocarcinoma with liver mets):
I had an ultrasound of my gallbladder in preparation for gastric bypass surgery. Masses on my liver were discovered, but it was thought that there were fat deposits, as I have fatty liver disease. CT was done, at which time I was told cancer could not be ruled out. Biopsy was performed. I was told that I had did not have liver cancer, but rather adenocarcinoma that had spread to my liver and that I and needed a colonoscopy and endoscopy, as I either had colon, pancreatic or bile duct cancer. The result was that I had bile duct cancer. My oncologist told me that I was not a surgical candidate and that the goal of chemotherapy would be to extend my life expectancy from 2-4 months to 6-12 months.
The reason I have a hard time accepting the fact that I am dying is that I never had and still have zero symptoms. I do not understand how it is possible to be terminal and feel perfectly healthy (minus the fatigue from chemo).
Has anyone else experienced this?
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