Newly diagnosed

Hi,

My husband was eventually diagnosed with intrahepatic cholangiocarcinoma last summer and like you had none of the normal symptoms.  His investigations began late in the previous year.  It is frustrating when you feel time has been wasted and hopefully you will soon hear when you can have your biopsy.

Have you looked at the AMMF website?  There is lots of advice, they advocate the urgency to be referred to a specialist hospital.  You can also contact them.  If you are in the UK Professor Bridgewater at the University College Hospital in London is a leading consultant and you can be referred through the NHS by your doctor or pay privately for an initial consultation.  My husband was referred to Cambridge who operated after about 8-10 weeks after the biopsy results last September.

Speed is important so keep chasing.  I hope the above information is useful.

Thanks for the reply CillaJane. It is appreciated. I have found my way to AMMF but not done a deep dive through the website yet. 

My husband is under Cambridge although it isn’t our local hospital and it isn’t a problem.  Just the extra travelling but it’s worth it for the specialist care.  I hope you soon have a treatment plan in place.  If you’re happy to, let us know how you are doing, I’m happy to answer any questions if I can.  

Thanks again. Did your husband start out with the local hospital for initial testing and then get his care transferred over? Has he needed any chemo either pre or post surgery? After my initial testing is over I think that potentially where my care is going to get split with my local hospital handing chemo if any is needed and the regional HPB centre handling the surgery.

Hi,

He actually had private medical cover (we initially investigated an allergy clinic because of his peculiar symptoms) he was then referred to a gastric consultant at the local Spire Hospital where various scans, ultrasound and finally a biopsy was carried out.  It wasn't until we received the results from the biopsy they confirmed it was Cholangiocarcinoma.  The consultant then contacted Addenbrookes (under the NHS) and liaised with them.  They insisted on yet another MRI, pet scan & fibro-scan before they would agree to operate.  

He had no chemo pre surgery but I have read of cases that do.  Then after the op he was given the choice whether he wanted to have adjuvant chemo by tablets.  These would be administered at the local Norfolk and Norwich Hospital for six months plus all follow-up monitoring & scans.

(However, he was offered to go on a blind trial through Addenbrookes which he opted for so we remain under them.   I'm sorry if that all sounds confusing.)

I would advise pushing for the referral to a specialist HPB centre as soon as possible, please don't feel you are being a nuisance.  Do you have any idea when the biopsy can be carried out?  This stage is really tough with all the uncertainty of test results, I hope you have close support.

That's really helpful thanks. It's great that you have addenbrookes. A really good hospital and research centre. The biopsy is tomorrow so see where we go from there

That's good & hopefully you won't wait too long for results.  I hope it all goes well, I'm sure it will.

I hope the biopsy went ok for you, any idea how long the results will be? 

Hi. The biopsy went well and they got what they needed. I think the results are between one and two weeks. I rang up today and they are not back yet

Good, let’s hope you will soon have a treatment plan in place and can focus on that. 
Out of interest (no pressure if you’d rather not say) where in the country are you?  Have you read about molecular profiling?  We didn’t know anything about this until after my husband’s operation so we didn’t request it.  Apparently they have his tissue stored if needed.  I believe AMMF suggests having it done as soon as possible, it’s something you can raise. 
Take care