New diagnosis

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Hello,

My mom was diagnosed with intrapathetic cholangeocarcinoma 1 month ago on October 31st.  She’s 73 years old and it was an incidental finding.  Her liver enzymes were high. They were Not off the chart, but elevated.  A follow up ultrasound, CT & MRI showed a single mass of 2.6 x 2.6cm in the liver (right lobe) nothing else in lymph nodes or gallbladder or anywhere.  Only other lab that was off was her CEA was at 57.  She’s crazy healthy. She has NO other health issues. She’s not jaundice, no pain.  She rides her peloton daily, walks and does Pilates.  She previously was a runner and even qualified ran Boston. She’s never been a big drinker and has never smoked.  She’s never been overweight.  Her only current symptom is that food doesn’t taste that good sometimes, and she’s rarely hungry although she is still eating normal amounts.  She makes herself eat. Anyway they went in for resection as she looked like the perfect surgical candidate.  Unfortunately when they did the lapoproscpy prior to resection, they found 2 tiny tiny lesions they tested and  were positive. The cancer had metastasized and surgery was aborted.  We haven’t met with an oncologist yet.  I don’t know what her markers are or what liver  biopsy showed. She’s not sure she wants chemo as she wants quality over quantity of life.  We are aware this is not curable but do we have any options? What kind of timeline do we likely have? When will she start going downhill and be unable to travel to Hawaii with Grandkids? Weeks? Months? Could we have another summer?  I’m so lost and devastated and so many questions.  Please help if you can and thank you in advance!

  • Hi - really sorry to know you're having to deal with this. My partner was diagnosed just over a year ago aged 61. It also came out of the blue and I've learned a lot! - including that this is quite a rare cancer which makes it difficult to generalise.  Everyone's journey seems to be different.  So there are no straightforward answers to your questions about timing and progression, and realistically the doctors probably won't be able to say much. From what you've written it sounds as though she's healthy and they've got it early, which is great.

    My partner's story is different to your mum's - he had jaundice initially and occasional bouts of infection since then. He's having chemotherapy now and dealing well with it, although it makes him very tired.  The stats are not encouraging but we decided not to worry about those - the numbers are so small anyway.  We also decided not to ask about prognosis, and we're taking each stage as it comes.

    My suggestion, for what it's worth, is to keep being optimistic but avoid planning TOO much. Do what you can when you can, and value what every day brings.

    I really encourage you to go to the oncologist with lots of questions about options. Ask if there are any relevant trials she could join. Push the team to check now whether the biopsy shows genetic mutations (it's a thing which is relevant for some new treatment).

    This Macmillan site is really helpful but you may also find it. useful to check in to the Facebook groups - I'm a member of 'Cholangiocarcinoma Support (UK and Ireland) and I think you'll find some people with similar experiences.  The UK charity AMMF has really useful information. It sounds as though you're in the USA? There might be other resources there but I know some US-based people use the British websites too.

    Sending hugs to you and your mum.

    Juliet