What to expect if no treatment.
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Hi Debbie,
I am sorry about your mom’s diagnosis. It is understandable that she has elected to forego treatment, and there are palliative care options her doctors can offer your mom to help her stay comfortable and maintain her quality of life.
To continue to address your question, I will be getting into some sensitive territory, so please, readers, do not continue if you prefer to avoid a sensitive topic.
Sometimes a question about what to expect is really asking what it will be like for a patient experiencing a very advanced stage of cholangiocarcinoma. This is a worry whether it is something that might happen soon, or – hopefully – much later on. It is a topic none of us really wants to think about, and it is hard to write about, but let me say a few things.
Your mom’s doctor can be helpful in answering your questions, both about arranging care and about symptoms to look out for. Our patients tend in many cases, when the cancer becomes very advanced, to experience symptoms related to either liver failure or sepsis (from an infection, e.g., from blockages in the bile ducts) so you can look for information if you wish on these two topics to learn about how they may manifest and what treatments and palliative measures can be used to help the patient. Experiences with this cancer, however, vary from patient to patient. Each patient’s journey will be their own, and will be experienced day by day with the support of family, friends and their medical team.
It is helpful to look into care options sooner rather than later, including hospice, so you and your mom have good information to look at well before it is needed. One of our wonderful Cholangiocarcinoma Foundation volunteers – Cait – wrote an amazing blog, and posted an excellent piece about her own experience starting hospice. This is hard to read, but is one of the most informative pieces I have seen told from the patient’s perspective. Here is the link: https://caitandthetumortim.wordpress.com/2019/07/05/what-is-hospice/
As specific questions come up, your mom’s care team will be on call, and you can certainly post questions for our community to help with. Our thoughts are with you and your mom.
Take care, regards, Mary
Hi Debbie, I’m so sorry to hear about your mom’s diagnosis. Your apparent family predisposition for this disease is, as Mary said on another thread, unusual. I wonder if there are scientists out there looking at whether there are sometimes genetic factors that can play into things. I’ve said elsewhere on this board that there are possible signs to that direction in our family, but there has only been one positive diagnosis.
Regarding your mom’s decision not to treat: It is challenging but also valuable to respect a patient’s choice on this front. I’m afraid it is hard to know what kinds of symptoms your mother will face as her disease progresses, since the disease affects patients in a variety of different ways. You might get a better sense of what to expect by digging around in some of the older posts on this forum. There is a discussion section dedicated to supportive, palliative, and hospice care that you might want to look through, and there are similar discussions that have cropped up elsewhere on the board.
In order to help make the process easier, I recommend that you open up conversations soon with palliative medicine specialists who can help guide your mother’s journey and address symptoms as they crop up. You may also want to speak with a local hospice center now in order to line up a caregiving and support team that will “fit” well with your family’s approach, when the time comes. This is true whether your mother wishes to stay at home or in a care facility. This is one of the hardest decisions, but it’s worth noting that supportive treatment, even though not specifically aimed at extending one’s life, can sometimes end up doing so simply because it improves the quality of a patient’s life. When patients are not suffering from pain and discomfort, it is easier for them to do things like stay active (within their capacity) and continue to enjoy a healthy diet for a longer period.
Sending you and your family the very best,
Hannah
My Mom at 88 has been diagnosed with cholangiocarcinoma. At this stage of her life, she did not want any treatment. She was told by the doctors that she probably had a year or so.
I had the same cancer in 2007. I had surgery and 6 months of chemo and so far so good. I am aware of symptoms and such, but just not sure what to expect going forward. Any input would be greatly appreciated.
Sincerely,
Debbie
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