Fiancé suspected Cholangiocarcinoma - first steps

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.

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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

So we just got confirmation on the cholangiocarcinoma . No word on if the biopsy of the lymph nodes indicate spread yet so hoping for at least some good news there.  The oncologist had already talked thorough treatment options plan is to try and shrink the tumour away from blood vessels with targeted radiotherapy and chemo (don't know what type), this will hopefully allow surgery in the future.

Hi,

I am so sorry to hear your fiancé's result.  Did you ask if your team would liaise with UCHL (Professor Bridgewater) or give you a referral?  It sounds positive that they are suggesting surgery maybe possible. There are treatments and trial options out there.

Take care xx

Hi i have been in similar situation recently and also fairly young (45).  Royal Free is a centre of excellence for liver issues such as this. We had the same ‘what on earth do we do’ nightmare but managed to get to good people..  happt to connect and talk specifics.  But def worth getting in front of thr right people. 

Thanks on the 2 replies CillaJane & TTTXXX , we are planning on attending the AMMF conference in May to try and see if we can connect with some experts on this issue, in the meantime we have a consultation with the oncologist today hopefully to get treatment started ASAP.

I would be amazed if they didnt do the durvalab (immuno) plus cisgem and gemsplatin chemo combo. Its very well tried and tested and seems ri be first line of attack.  Theres a full page on the macmillan website. 

also agree the ammf website is great. 

i wasnt well enough mentally or physically to look at all that at the start but some friends did it all for me and pointed me exactly where i needed to go.  U just have to ignore thw stats and remember you fiance is a person not a stat and also with age and previoua health on his side.  My onc said to just if the stats which is easier said than done but he is right.   There are people who beat this totally who were once were we are now. 

Oh i hadnt seen rhe conference looks good.  Are u going in person? Can patient attend as wasnt sure the way i am reading it 

i will most likely have to zoom anyway cos of childcare! Bur def learning knowledge is power in all this!!!!