Bile duct cancer

A support group for anyone affected by bile duct cancer to come together, share experiences, and ask questions.

Waiting...

ayelapa
Posted by

Hello all,

I have had a 2 cat scans, 2 ECRP’s a EUS and multiple blood tests.over the last 8 weeks. 

It started with a slow yet constant weight loss. 25 lbs in the last year.

The weight loss is accelerating.  In the last month I’ve lost 10 pounds    

Severe attacks of nausea.  Then, all the tests. 

I’m still without a diagnosis.  Double duct syndrome was observed. 

Blockage of my CBD and my PD. A stint has been put in twice during the ECRP’s.  Now my gastro doctor wants to do another. No mass was observed in my pancreas  

Needle biopsy and scrapings were taken. Pathology said cells looked “probably cancerous” but not definitive. 

Tumor marker was elevated in my blood test. 

I am loosing my mind not knowing.  

You would think after all these tests I would have a diagnosis. 

My life is in a state of suspended animation. All plans for selling my home and retirement are on hold. 

I’m prepared for the worst. However, not knowing is the worst. 

My doctor thinks it is “probably” cancer of the bile duct. 

The next ECRP is scheduled for early next month and doc says he will send these scrapings to the Mayo Clinic for more detailed analysis. Then take my case to a “tumor board”.  Does anyone know what all this means and why diagnosis is proving so difficult??

(My doctor is nice, but very young) 

I have no jaundice or abdominal pain.  I am a 65 year old woman.  

I would appreciate any feedback you in this group may have.

Thank you in advance,

Alex

Hoping for the best. 
latchbrook
Posted by

 

Hi Alex

I'm not a member of this group and can normally be found in the skin cancer and melanoma groups. In fact, looking through your previous activity I can see I replied to a post from you in the skin cancer group back in April. How did your Mohs procedure go?

I've found this information for you on bile duct cancer which includes how it's diagnosed and treated. Unfortunately, as no one in the community is a medical professional we'd only be guessing as to why diagnosis is proving so difficult. Have you been assigned a clinical nurse specialist (CNS) as they're usually a mine of information and should be able to tell you what the hold up is.

In the UK once all the tests and scans are done the results are looked at by a group of health professionals in a multidisciplinary team (MDT) meeting. This may include a surgeon, oncologist plus other health professionals who specialise in bile duct cancer. This might be called a "tumour board" in America.

It may also be worth your while taking a look at AMMF's website and speak to their members. Like Macmillan they are a UK based charity but anyone is welcome to join and seek information about bile duct cancer.

I do hope you can get an answer soon as waiting to find out what is wrong is incredibly stressful.

Do come back and let us all know what happens.

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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