liveronmymind7 years ago

Dear Timothy

I would STRONGLY advise you to get an MRI scan with contrast AS SOON AS POSSIBLE even if you have to do it privately. It could be nothing but it could be something and better safe than sorry.

I am speaking from sad experience

Do not Delay and time is of essence.

HBV in particular, if it has caused cirhossis can lead to HCC

BUT even in the worst case scenario you are still fortunate as just one less than I cm spot can be radi frequencied or cut off etc etc - "Bolly " is the expert on this and had a 'nasty' from HBV and lives to tell the tale! Bless her

Consultants are sometimes just a bit too laid back and non alarmist.

Best wishes and hope it's nothing of concern.

TimothyB in reply to liveronmymind7 years ago

Many thanks for the advice, I will get it done to just have a peace of mind, not worrying about it for 3 months! I will keep you posted.

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Bolly7 years ago

Hi again Timothy. I've found the thread where we exchanged information before, 2 years ago? And found that a fibroscan you had after a year on treament had gone from being in the 40s to around 7kpa - amazing, you must be soooooo pleased, that suggests the drugs and hopefully your improved lifestyle (do you have an improved lifestyle??!!!) have done the trick. A Fibroscan I had done 6 years ago was 12kPa, so not as high as your first, but i already had a 1cm HCC tumour at that stage. I've had a biopsy since then that suggests at least part of my liver has improved since being on the meds, but like you, i still take my daily Tenofovir and still turn up for my 6 monthly scans.

Because yes, we are at higher risk of liver cancer than many, and the docs monitor us closely because of this.

Liveronmymind is right, i did have a 'nasty' from HBV, but to be fair to the docs, it was BEFORE i started Tenofovir. I hadnt been on any treatment for years and years, and thats probably why i developed cirrhosis and cancer.

I'm still at risk of a recurrence or a de-novo tumour though. And like you, recently the radiographer doing my 6 monthly ultrasound found a small 'spot' on one segment. They scheduled me for an immediate MRI, but like you I discovered my consultant was not worried about this mystery 'spot' and was happy for me to wait til our next consult to discuss. In fact he was very cross with the radiographer for mentioning it to me and causing alarm.

So like you, once i knew i had a 'spot' i worried and worried til i could stand it no more and asked my GP to ring my consultant and tell him how anxious i was getting. She did that for me, and my consultant reversed his original decision and agreed to an MRI (like Liveronmymind suggests), as these are really good at differentiating between a cancer tumour and other lumps and bumps such as lesions and cysts. Turned out the spot was nothing, probably a bit of scar tissue from previous surgery they said.

Of course, it could be different in your case. ... of course you will be worried it could be a developing tumour, and like Liveronmymind says, the sooner these are dealt with the better the outcome.

It might also just be a lesion or a cyst, which are benign.

You could do what i did, to put your mind at rest. Get your GP on your side to request an MRI to clarify the matter.

oh and PS, I'm absolutely delighted that your liver health appears to have improved so much. Keep up the good work ...

TimothyB in reply to Bolly7 years ago

Thank you Bolly, yes, I remember you 😀, I was suffering from anxiety then, bit better now. I don't know why the stiffness has gone like that, but I did stop drinking. Only a year ago, I cut down the red meat. My consultant was quite conservative about the progress, he told me yesterday they only refer to the worst scan results. And chances of getting a nasty stuff is 1-3 percent a year, that's very high, but I guess everyone has their own luck.

I will try to speak to my gp tis week to get a scan, private or nhs, which ever. Will keep you posted.

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TimothyB in reply to Bolly7 years ago

I forgot to mention, the scan 7.9 was done a year ago, six months ago I was told to do it again as they didn't trust the results, it came out as 5.5. So pretty much normal now if I only look at stiffness. But the consultant didn't share my joy and preferred biopsy, 😀

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Bolly7 years ago

Fibroscan and biopsy do 2 different things. Fibroscan as you say is a measure of stiffness, the stiffer the liver the more scarred and damaged it is presumed to be. Its quite a useful tool if used as a monitoring tool, perhaps as in your case done every few years to see if things are getting 'better' or 'worse' and adjusting treatment and lifestyle advice accordingly.

The biopsy looks at the liver tissue itself, so perhaps the consultant wanted to see if there was still evidence of disease, or if the damage had, say, progressed to bile ducts or had in fact improved. What the biopsy can do is both Stage and Grade. The stage relates to the degree of scarring and the grade relates to the severity of the underlying disease process and the speed it is progressing. I've had 2 biopsies three years apart with both Grading me at 7 which is fast for the progression, but Staging me first at 6 and then at 1 - which could mean either they took the samples from different parts of the liver with wildly varying degrees of damage ..... or the treatment has improved the liver histology though not slowed down the speed of damage.

There are limitations to both. The Fibroscan wont diagnose a cause. And the biopsy wont assess overall liver health, just the health of the tiny sample they take.

The latest technology is a Multiscan which a few on here had done recently as part of a trial. This combines MRI with other technologies i believe, and gives what seems to be a much better picture of the WHOLE liver health, with images in traffic light colours of red, amber and green for the patient to actually see their liver in graphic form.

I would be chuffed at a further improvement to 5.5 even if the consultant wanted further confirmation via biopsy!

TimothyB in reply to Bolly7 years ago

Hi Bolly, a quick question, do you get discomfort around liver? Sometimes it feels sore , definitely not the skin, sometimes a sharp ish ache, this is the only thing I notice otherwise I feel ok, quite fit, no fatigue now, I would think, despite the improved stiffness, something has not been the same, and someone told me liver doesn't feel aches etc.

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Bolly7 years ago

When i was diagnosed with HCC 5 years ago i had no symptoms at all, no pain, nothing. Came out of the blue as a shock.

I had been feeling more fatigued and achey but this was later diagnosed as the start of Autoimmune Hepatitis and i have the same symptoms from this still.

When the radiographer found this mystery 'spot' a few months ago i did have occasional stitch like pain in the area where he said it was, but this went after the MRI so i think it was psychological!

Yes people do get upper right quadarant pain, which is possibly something called the Glisson capsule which surrounds the liver, stretching if the liver is enlarge or inflamed. Or an enlarged liver pressing on other tissues/organs/nerves? The liver itself has no nerve endings so the pain will not be coming from the liver tissue itself.

TimothyB in reply to Bolly7 years ago

Hi ,

I would like to give an update and ask few questions.

I have managed to get a referral to have an MRI scan in a local hospital (a private scan). The scan is due to take place on this Sunday. They have told me it would last about 30-40 minutes.

I have never done MRI before. Here are my questions.

1. Would they be able to tell me straightaway whether this spot is anything worrying or not?

2. How do I pass on the scan results to my consultant in Birmingham? Fax the images or email?

3. Can I keep the images for safekeeping?

The first question is obviously important as I may have peace of mind if it turns out to be okay on that day.  Thanks for any input.

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Bolly in reply to TimothyB7 years ago

I can't answer 2 or 3 as never had a private scan. I do know that different hospitals have different computer systems and it's not always possible to transfer images electronically between hospitals. That's a question for the hospital doing the scan.

Question 1.  Usually it's a radiographer who does the MRI and they should not interpret what they see as they are not trained to do that.  Radiographers do 100s of MRIs and CTs of different parts of the body so are not specialists in livers. It's usually a consultant radiologist who interprets the image and writes a report and hopefully in your case a radiologist specialising in biliary imaging.  In my experience of having this done within the NHS it takes a few weeks for the report to be written up, as emergency cases take priority.  However it may be quite different having this done privately. 

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TimothyB in reply to Bolly7 years ago

Thanks Bolly as always. I guess I will try to be nice and find out whether they can provide some news asap. I will keep you updated.

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LAJ123 in reply to Bolly7 years ago

The national Hospital for Neurology and Neurosurgery send their patients to a private MRI scanner opposite the hospital.  I had mine brain scan there.

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Bolly in reply to LAJ1237 years ago

How did the scan image and report get to your consultant LAJ123 and did you get a copy too like Timothy will?

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Bolly7 years ago

If you've not had an MRI before .....  its different to a CT machine in that your whole body goes inside the tube of the machine while lying on a trolley.  Its magnetic, so you must not have any metal on you, no zips on your clothes if they let you wear own clothes (my hospital does), no piercings etc.  If you are having contrast dye injected (its best if you do as give clearer image) then you will have a cannula inserted into your hand or arm first.  The dye will be injected when you are about 3/4 way through the procedure.  The technicians should give you headphones and a way of communicating with them via a mike or a button to press, you can ask for music or radio to be played through the headphones as a distraction from the noise of the machine and the slightly claustrophobic surrounding.  I find it best to keep my eyes shut then i dont see how close to my face the roof is!      If you can bear not to ask them what they find, i would.  At my last scan the technician told me he had found a 'spot' which caused me lots of alarm and anxiety for over a month til i found it was just scar tissue.  Try and wait for the full report.  Yes please let us know how you get on.

TimothyB in reply to Bolly7 years ago

Thanks Bolly, 

I attended the scan today, it wasn't too bad, just had to breathe deeply all the time, the radiographer said later I breathed 9 times in a minute, usually people do 15. I was relaxed I guess.

I couldn't help asking if it was something worrying, he refused to answer. The report will be done by a radiologist and sent to my consultant in a week, I can also have one copy plus images. Can't wait to know!

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Bolly7 years ago

Normally they ask you to "breathe in...and hold your breath.....(a few seconds pass)... and breathe normally again.  This repeats several times at random during the procedure.  Not a breathe in and out all the time instruction from what I remember and I've had about 6 MRI scans.

Absolutely, the technician is not trained to interpret the scan and would probably get a stern reprimand from their employer if they did tell you what was in the scan.

Getting it written up in a week is good, that's the plus of private over the NHS I guess and perhaps explains why us NHS patients wait longer as they are being paid to do yours first, ha ha! Only joking. 

When do you see your consultant next to discuss the outcome?

TimothyB in reply to Bolly7 years ago

I guess I will see what comes out from this scan first, if it was good news, then I will attend the next appointment as planned in 3 months time, if not, then I will contact my consultant to see what to do. I haven't told him that I have gone for a MRI scan, so some communications will be needed.

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TimothyB in reply to Bolly7 years ago

Hi all,

Received the CD disc today, here are the comments from the report:

The liver is non-cirrhotic.. There are at least 3 tiny cysts present arrowed on series 11. One is in segment 6. A second tiny lesion is on the surface of segment 5. There is a 1 cm cyst high in the left lobe under the diaphragm. On the dynamic contrast run, there is a 1 cm blush in segment 6 during arterial phase. This is not seen on any further imaging so I am calling it a THAD. No other significant abnormality in the liver. Gallstones noted in the gallbladder. Bile ducts not dilated. No other significant abnormality.

Impression 3 small cysts in the transient hepatic arterial defect. No sinister lesion seen.

I assume it is good news after all the worries? Nothing sinister..... But gallstons? What do I do with them??   Many thanks.

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Bolly7 years ago

I'm not medically qualified but generally lesions and cysts are considered benign, britishlivertrust.org.uk/li....  With that many spread over different segments I would be tempted to delve a bit deeper into what might cause them, and see if any changes to lifestyle might help stop more developing.  

With the gallstones there is useful information here britishlivertrust.org.uk/li....  You can live with them if they are not causing symptoms and maybe prevent more developing by looking at your diet.  Some people are offered surgery to remove the gallbladder but from reading a lot of posts from people I know that this can be a success or can leave the person with continuing painful symptoms, it's a risk/benefit situation.  

Will be interested to know what your consultant advises.

TimothyB in reply to Bolly7 years ago

Thanks Bolly, I will try to see whether my consultant has got the results as well, next appointment is in 3 months time, perhaps can have a better chat then, now I can relax and enjoy my life a bit more. 

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