Topic: Confusing diagnosis

Hi
I am writing from Bangkok where doctors were convinced I had this cancer - jaundice, high bilirubin numbers etc but the Endoscopic biopsy was negative and the pet scan not conclusive.
I am considering coming back to the uk for a second opinion. Any ideas?

Re: Confusing diagnosis

Dear cjbenner,

I do hope it is some other diagnosis. Remmeber high bilirubin is not always CC.

did you have other symptoms & signs? Did they do a CT scan, a cholangiogram at the time of the ERCP?,   a MRCP?

What was their final diagnosis?

If you are not convinved I would always suggest getting a second opinion, especially because this cancer is not alway so easy to diagnose.

Rain

Re: Confusing diagnosis

Welcome, CJBenner, to our remarkable family, so sorry you had to find us. I would definitely get a 2nd opinion, as Rain said, CC is a very difficult Cancer to diagnose and we are big believers in 2nd and sometimes 3rd opinions. You also want to make sure that where ever you go for testing and treatment, if that be the case, that they are VERY familiar with CC. CJ, listen to your gut it won't steer you wrong. If you feel confident where you are that is one thing, if not go back to UK. You have come to the best place to be for information and caring people. Please do keep us posted, we really care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Confusing diagnosis

Hi CJ,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what you are going through. But I am glad that you have joined us all here as you are in the best place for support and help, and you will get a load of both from everyone here.

A second or third opinion is a great idea and I so agree with what Rain and Lainy have said to you about doing so. Should you wish to seek these opinions here in the UK then here are a few links that will be of use to you.

Guidelines for diagnosis and treatment (UK) – An Update

http://www.ammf.org.uk/cholangiocarcino … atment-uk/

Specialists with an interest in cholangiocarcinoma and where they work (UK)

http://www.ammf.org.uk/cholangiocarcinoma/specialists/

Specialist Treatment Centres

http://www.ammf.org.uk/cholangiocarcino … t-centres/

Hopefully some of these links will give you more info relating specifically to the UK. And keep coming back here CJ and let us know how things go for you and what you do. We are all here for you and will help if we can.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Confusing diagnosis

I agree. Get to the bottom of what caused the jaundice. Like someone said, there can be many causes of it though I have heard of ERCP missing a positive (false negatives or inconclusive ). My sister had 2 biopsies (per cutaneous) because the first one was inconclusive. Bottom like: follow up to find root cause.
Best to you and Your health!  Willow

Willow

Re: Confusing diagnosis

I agree with what the others have mentioned.  Additionally you might try to get in touch with Suebpong Tanasanvimon, M.D.,Division of Medical Oncology,
Department of Internal Medicine, Faculty of Medicine, Chulalongkorn University.  He is one of our grant recipients and provided a webconference for us:http://www.cholangiocarcinoma.org/media.htm
Please, stay in touch.  We care.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER