Liver Cancer diagnosis ... but are they sure???

My husband was admitted to hospital (A&E) in mid-Feb with breathing rather sudden breathing problems and raised heart rate. This was only a couple of days after he had been relatively close to other people to get his first jab of Pfizer, so we were initially concerned whether he could have caught the virus.

It turned out to be serious blood clots on his lungs. Treatment for the clots worked well, he was OK to go home after 5 days and is moving around normally. He is on anticoagulants now, initially for 6 months. However, as he had no history of clots and the doctor wasn't sure what the trigger could have been, a CT scan of the lower half of the body was scheduled. The upper area (chest, lungs) had already been scanned while my husband was in hospital and nothing apart from the clots was found. 

The lower body scan was then done early last week and on Friday afternoon the hospital doctor (who is a consultant respiratory physician) phoned back and dropped the bombshell: liver cancer, several tumours. He said he would schedule a blood test with the GP (which will be tomorrow) and an MRI (we don't have a date yet) to check whether it is primary or secondary. He didn't want to schedule a biopsy because it might spread the tumours.

So we have very little detail so far, therefore for me it's still the "waiting for diagnosis" phase. We know from blood tests in October 2020 and autumn 2018 that bilirubin levels were at towards the upper end of the normal range. My husband was diagnosed with HCL years ago and had treatment in 2013 (hence the blood tests), platelet levels have not been a concern since then. He sometimes feels "a bit sore and bloated" on the right below the ribs, so yes, there's is something not quite right, but it does not fit the "typical" listed symptoms for liver cancer.

Our thoughts at the moment are: (1) are unexplained clots and a CT scan already sufficient information to rule out benign tumours, lesions, more blood clots or even gallstones? (2) who looked at this CT scan and worked out the conclusion? only the radiologist and a doctor with expertise on respiratory matters rather than liver? (3) based on the CT (I know the MRI has better contrast and should give more details): how many tumours? what size? locations?

We'll ask the GP to give us a printout of the blood test as soon as available. We'd also like to see the write-up from the radiologist (staff name redacted would be fine) - do we actually have the right to obtain a copy?

  • Hi yes you have a right to ask for copy of the report.because of the negligence of the hospital I have asked for transfer to another hospital who cares more.

    I have also the CDs with all my pictures and also I keep all letter from "funeral director" = doctor.to my gp which letter is saying everything different what she said.

    I am battling stage 4 since 2019 but this time I fight back.

    Anyway you can ask for pictures and reports and ask for second opinion.

     

    Denisa

  • Hi, thanks for the quick reply.

    I have dug around a bit more since posting, have now also found confirmation that reports and records must be made available free of charge and no reason needs to be given when requesting them. So, that's useful.

    We're not saying the hospital has been negligent, it's more that we want to understand the process and get a complete picture. It helped us resolve a critical stage during my husband's HCL treatment years ago... maybe we can do it again (although I know that Dr. Google can give bad advice!).

    And yes, we'll go for second opinion if we have any doubts.

    Keep up the fight!

    lowlandcow

  • We got the blood test prints quite fast in the end: Bilirubin up slightly from autumn last year (now at 23). One other value up since October as well. No AFP value was taken, but my understanding is that it might only be relevant once any treatment has started (to see progress).

    CT report says one large liver mass (15cm) plus a number of smaller ones. We got a CD with the images, so I can see what the radiologist referred to. Write-up says "central low attenuation, peripherally enhancing", possibly indicating malignancy, but GI discussion and probably also biopsy required. Radiologist also added a question whether there is any history of liver disease.

    Consultant (still the original hospital doctor by the way) said he'd schedule MRI and referral to liver specialists in Edinburgh.

    The MRI was done 12 days ago, still no report back (as of Thursday when we phoned the consultant again). Consultant said Edinburgh have ruled out getting involved based on CT scan and also ruled out surgery/transplant. He also said the MRI results won't be important, instead he's scheduling a biopsy at the local hospital, to determine which chemo therapy will be most suitable. The liver experts in our hospital trust area will deal with treatment. We'll get a copy of the MRI result and images anyway.

    So... we're now waiting for the biopsy appointment, probably happening next week. At least the biopsy should end the guesswork regarding how bad the situation is.

    No face-to-face appointments yet. Seems that's how the NHS now deals with cancer diagnosis, just whack people over the head on the phone :angry:

    Only positive side effect among all this is: we're now working our way through a clearout of our house. It's a good distraction while going anywhere is still restricted. And it will be useful in case we only have very little time left.

    I'll update when we know more.