Alpha fetoprotein test for cirrhosis patients??

[teale100]

Hi, is it standard for this test to be done every 6 months with the liver scan? I've just had my bloods done (post liver scan and pre consultant appointment) and spotted that I have been tested for this for the first time and the results are hidden from my Patient Knows Best account ... should I be worried or is this standard? I have compensated cirrhosis diagnosed 12 months ago - suspected auto-immune cause.

[AyrshireK]

AFP as you probably know is a screening test for tumours and I know that my hubby with auto immune cirrhosis does get the test every 6 months along with his routine cancer screening ultrasound scan.

I don't know about it being reported or on the portal you mention as we don't have any access to such a thing but doctor does tend to discuss the results with us at consultation.It would be rare for someone with auto immune related cirrhosis to develop liver cancers (but not impossible) which is why you are screened 6 monthly so that if anything untoward was to be picked up it will be picked up quickly enough to actually intervene and treat whatever it is.

Don't panic, discuss results at your next consultation.

Katie

[teale100 in reply to AyrshireK]

Thank you! That is really helpful. I appreciate it Katie. Best, Vx

[CarpeDiem11 in reply to AyrshireK]

Out of interest Katie, why would it be rare for someone with AIH to develop tumours?

[AyrshireK in reply to CarpeDiem11]

I don't know the exact 'why' but I am am just reporting back what both of hubbies consultants have told us - higher risk in the viral hepatitis's, fatty liver, alcohol related liver disease and haemochromatosis. In all my years membership of the AIH Facebook page I don't think i've heard of any of members having had liver cancer (barring one but that was due to previous Hepatitis B infection rather than the AIH).

[CarpeDiem11 in reply to AyrshireK]

Thanks- good to know

[Porcupine_Tree]

My Consultant prefers 6 monthly ultrasounds. The 'closer' you can physically get to a patients organs without "opening up' the more accurate the diagnosis.

CT Triple phase Liver scan tells the best story.

AFP is 6 monthly standard and doesn't require in depth Hep knowledge. Just prompts "further tests necessary".

Also current CT waiting times are >4 weeks in my CCG.

c. £500 and mild dose of radiation

[Kristian]

Hi teale,

As others have said, the Alpha Fetoprotein test is pretty routinely done in patients with cirrhosis as there is a known higher risk in that cohort of patients of developing cancers and tumors.

I wouldn't worry too much about the result not appearing on your test results portal though. I've found with the two systems I have access to that on both some of the more obscure tests dont appear. I've had to ask at clinic what those results were or they'd be included in the letter to the gp that I get copied in on. So that in itself is not necessarily indicative of anything sinister.

[teale100]

Thank you all. I had my consultant appointment and all is well. Still compensated, no anomalies on the scan and bloods perfect. Interestingly my fibroscan score has gone from 23 down to 10… thanks again

[Springwater22 in reply to teale100]

Hello. Hope you don't mind me asking...with the fibroscan was that something you had to ask for? That seems like a brilliant reduction in the score too, did the consultant say much about that? I only ask as my husband scored low 20s when he had his fibroscan about 2.5 years, we are under the impression it doesn't get repeated though. I'm wondering if its worth asking the consultant about at the next appointment.

Great to hear for you your bloods and results are all looking good too 😊

[teale100 in reply to Springwater22]

Hi, my consultant suggested repeating after a year… and he did it in our consultation. He was testing to see if it was worth checking me for varices as I was borderline for checking with a 23 fibroscan x