Not sure what to do

[Funkhauser]

Hi,

I'm a 59 year old male from UK. I've not posted before but am really worried and feel very unsure of what is going on.

I was diagnosed with Cirrhosis back in March this year. (Went for unrelated scan)

At the time I was told my rating was Child-Pugh A

I had stopped drinking just after Christmas 21 and have not drank alcohol since.

I went for my bi-annual ultrasound scan in September. At the time I thought it odd that the radiologist would tell me she couldn't see all my liver and she'd let the doctor know.

A week later the doctor from the hospital rang me up and said very matter of factually that the scan had shown up something on my liver, and she'd like to send me for a couple of CT scans and a endoscopy.

I have subsequently had the CT scans at one hospital and the endoscopy at another where I was told that I wasn't suffering from varices. (good news)

However after signing up for an account "MyMFT" (patient portal) I saw the referral for the CT's (Not sure if it was supposed to be visible) stating "appearances are concerning for a HCC"

The doctor is on holiday and won't be back until mid-November. Her PA told me there were no results on my records.

The hospital where I had the CT's carried out, say they can't confirm the report has been sent but they've got a backlog.

I'm thinking the worst and freaking out! Had to take time off from work, not sleeping, anxiety through the roof etc.

How can I get answers?

Sorry for the long post.

[AyrshireK]

Hi Funkhauser, sorry to hear of the scary time you are having.

It's always a worry when you see something mentioning potential HCC and there are waits involved . However, the very reason you have the 6 monthly ultrasound is so that if changes in the liver are picked up then you can be followed up timeously and if the worst was found it can also be dealt with in quick time.

The ultrasounds are always sort of labelled as HCC screening and therefore when a lump or bump is found but isn't identifiable on the u/s you will be sent for a follow up scan - in your case this has been the CT's - some folks get an MRI and this will be to screen said lump or bump as it is concerning as potential HCC but not confirmed as such, hence, the need to examine it more closely with better quality imaging.

Ok, some abnormalities did get picked up on your scan and in order to expedite waiting times they will send you on for further scans on an 'urgent' basis just in case it does indeed turn out to be a liver tumour - in most cases any lumps and bumps found at follow up scans do turn out to be benign and not cancerous.

Twice now in 10 years my hubby (with cirrhosis) has required a follow up MRI scan because of unidentified lumps showing up in his ultrasound - these lumps have turned out to all be totally benign. Some were just extra dense bits of cirrhotic liver, some haemangioma and also some cysts. On both of these occasions despite his MRI being requested on an 'urgent' basis as cancer screening the urgent list ended up being a 12 week wait.

I know it's really difficult waiting for results and particularly when you've seen the scary words BUT hopefully like most people who get a strange lump or bump in the liver it will turn out ok. If it is however actually an HCC then all isn't lost, if it wasn't there the last time you scanned but has appeared now it is early days and there are several treatment options to deal with it.

Hopefully you'll hear from your doctor very soon with the results and all turns out ok.

Katie

[Funkhauser in reply to AyrshireK]

Hi Katie,

Many thanks for your quick response and reassuring words.

I will take the positives as you say, 6 months ago it wasn't there.

Thanks again

Pete

[Rshc]

it isn't great they have left you to worry like this. What I will say is that my partner was diagnosed with cirrhosis in Dec and recently got access to his on line records and when he looked back to December it said they were admitting him for 'query cancer' (which he doesnt have). You will know soon enough what you are dealing with and if it is the worst case there is no reason to believe that it won't be early stage and treatable.

[pushthrough]

I have to say I try to avoid reading the medical records now. Every time I read them it causes anxiety. Notice I said try not to. I always end up reading them because sometimes you have to be your biggest advocate. I’m hoping it isn’t hcc but like someone mentioned above, if it is theres treatment. I’m very thinkful they have 6 month follow ups so if something does pop up it’s caught early.

Side note: I’m noticing the UK seems to be doing more research on cirrhosis than the USA.

[Readlots]

Hi, the NHS Ap is a wonderful and terrifying thing. I had a similar experience which turned out to be nothing serious so hopefully yours will be the same. You’ve done all the right things trying to follow up. Including talking to the doctors PA ( often the best way to get answers). Fingers crossed for mid November.

[Cat-B]

hi that’s very stressful, go and see your GP they can access your hospital tests. No one is going to tell you good or bad news over the phone, as only a doctor can share the results with you. So it’s your GP or make an appointment to see your consultant as soon as they come back. Take care

[Funkhauser]

Many thanks for all your replies and reassuring words. Since I last posted I have been told by a Dr. at the hospital that as well as the CT scans (still waiting for results) I will need an MRI.

I'll post back when I have the results.

[Funkhauser]

At last, all further tests completed and final test result back yesterday and it’s great news!

The “mass” that was reported after the ultrasound has not shown up on the more in depth MRI’s.

Although this provokes a lot of questions, I’m dismissing them for now.

The Doctor has advised me that currently my liver is functioning well and there is nothing to suggest HCC.

Again, thanks to those who posted with advice and kind words.