Fiancé suspected Cholangiocarcinoma - first steps

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Hi,

my fiancé (37) had blood tests and ultrasound tests when she was visting her parents in Brazil in December which showed high GammaGT and then ultrasound showed a mass in the liver.

When returning we flagged this though the NHS system which got another round of blood tests (high GammaGT again) and subsequently a CT scan which confirmed a mass in the liver which the doctor said was isolated to the liver and was suspected to be cholangiocarcinoma but to confirm an MRI was needed as they were not sure.

We have just received news from the MRI scan review that the growth is in an inoperable part of the liver as it is too close to veins etc. And that they have seen enlarged lymph nodes which they suggest may be a spread. Again they are not 100% sure that this is cancer but she is scheduled for a biopsy and an Endoscopic Ultrasound to confirm as well as being booked into an oncologist to discuss treatment.

I guess I am writing to see what steps I can take to ensure that she can get the best treatment, is it worth getting multiple second opinions? Where is best to send the scans to, we have currently requested the scan images and she is sending back to Brazil to some of her friends as they work in the medical industry there. Is the news of it being inoperable down to skill level or something else.

Sorry for the long message but I'm kind of spiralling at the minute as I have lost my mum late last year to cancer so not really in a good place.

Thanks

  • I should also mention she has had no symptoms - jaundice, Itching, light stools, dark urine, abdominal pain (gets cramps occasionally but this was normal for her), loss of appetite/ weight loss or fever

  • Hi,

    I'm no expert, my husband was diagnosed last July so I have spent hours researching and looking for advice.  He also had no typical symptoms, cholangiocarcinoma often seems very difficult to diagnose.  His was confirmed after a biopsy so I hope your fiancé isn't waiting long for her procedure.  It's a horrible wait.

    If you haven't already, I would suggest you look at the AMMF website which specialises in this cancer.  I think you can contact them too for advice.  They very much advise getting in contact with a specialist hospital in this disease, the main one in England is UCLH London.  They offer appointments though the NHS with a doctors referral or you can pay privately for an initial consultation.

    Sending well wishes, I hope the above information might be useful.

  • Thanks, biopsy is booked for Monday so hoping that goes well although chances of positive news look slim.

    we have the MRI and CT scan images now and sent to Brazil for 2nd opinions and will try to get the doctor here to refer to UCLH as it has been looked at only in Edinburgh unsure of their expertise but with a larger population down there they may have other ideas.

  • Hello EmmyBobs, I am so sorry for your plight with liver cancer.  I am here with extrahepatic distal bile duct cancer.  I am being treated at New York University NYULangone Perlmutter Cancer Center. They are cutting edge in treatments offered and they participate in many clinical trials from big pharma.  They also have many internal research trials conducted in-house by their staff. Perhaps they will have an option for you either surgical or chemo treatment that can help. It may be worth it to get an opinion after all the preliminary tests have been done. I hope they can help you.  In the USA they are rated the #1 medical center as well as #1 in New York City. They are known for taking care of cases no:matter ability to pay and their expertise is cutting edge and innovation in cardiac they succeeded in putting a baboon heart to extend life while waiting for a heart doner.  They recently transplanted a human eye and connected the optic nerve.  For pancreatic cancer they have a doctor the inserts seeds in the pancreas to prevent onset of diabetes.  Try them for a second opinion maybe they can help you.

    when Memorial Sloan Kettering Cancer Center in NYC told me after robotic surgery last November my cancer would come back and it was not a positive prognosis. NYULangone offered me hope.

    Best of luck to you. Explore all your options