Imaging of the liver especially in the setting of cirrhosis (which is a chronic condition of progressive liver damage - usually due to alcohol or chronic hepatitis) is pretty difficult. The appearance of liver cancer tends to look similar to other lesions which are not necessarily malignant. In cirrhosis, it is not unusual to see nodules which are not clearly malignant.
The MRI seems to offer the best images - there are several views available and most of them have opposite findings. What appears as shadow on one view appears as lighted on the alternate view. But if the doctor said prepare for the worst, the most likely scenario is that the image is not definitely benign. The doctor cannot say it looks definitely malignant. To make the diagnosis, other things need to be done.
If the doctors are contemplating a primary liver malignancy, there is a blood test which could be performed and may eliminate the need for a biopsy. The test is called alpha fetoprotein.
Should the test result be not significantly high - then a biopsy should be done.
The outcomes for liver cancer are good in the setting of surgical candidates, however, if the cancer cannot be resected - the expected survival is limited- a function of a few months.
Discuss also the status of the liver itself, part of the reason why the outcomes are poor is that most patients are also likely to die of liver disease not simply due to cancer.
The descriptions you give make me imagine that the patient is pretty much bedridden? I hope I'm wrong. Its hard to say what is sinister or not - because in the final analysis - even if this is not cancer, it may be an indolent infection, it may be immune-mediated, if the liver reserve is too little- this will be the determinant of over-all outcomes.
Thank you so, so much for taking time to answer my plea, from what must be a hectic schedule of yours.
..they have told him that he has cirrhosis of the liver due to what they said was his "drinking" and that his body is lacking or not being able to retain protein. He does have nodules on his liver...However, were stunned/stumped with the fact my brother doesn't drink....The other cause they felt, bitten by an insect whilst in a tropical country...Only place he ever went to was Australia for a months holiday, some 20 year ago...
...It’s so confusing and frightening, the initial hospital dismissed him as his case baffled them and they never got down to any route cause.
He was then given an appointment to see a leading liver consultant, after numerous tests, blood tests etc, who said he was doing well and that the liver is a great organ for regenerating itself….. that they would write to him if any untoward showed up…never heard anything.
Then this latest MRI (he’s had several) showed shadows….from what his own GP says, it doesn’t look very promising, but ….well, what can one say???
try to find out if there was a blood test called alpha fetoprotein already performed. This will help clear up things.
If the test did not reach threshold value to diagnose liver cancer, then the biopsy is the next step. We need to find out if the nodules are indeed malignant- because as you said, there is a reason to believe the liver will pull out of this until the new finding emerged.
If there are several shadows, it may also be possible to be cancer from somewhere else with the liver being the site of metastasis. The alpha fetoprotein will not help in this scenario - but the biopsy certainly will.
Try to come up with a plan that is acceptable to your brother, but keep an open mind, as new findings tend to raise new questions.
Thank you so, so much for taking time to answer my plea, from what must be a hectic schedule of yours.
From what I understand from one of the numerous tests in hospital, they tested him for retention of protein and found that his body wasn’t retaining it, so they put him on protein drips scheduled one every 12 hours. However, not too sure how closely he was being monitored as more often than not, they missed out complete days which resulted in him having two bags every 12 hours – said they were short staffed.
At one stage, a biopsy was mentioned and dismissed. Even the leading liver consultant (different hospital) dismissed it.
He has taken his partner to every appointment so he’s had somebody with him…. They were told they have found two small shadows (from this recent MRI scan) on his liver which they think may possibly be tumours though not sure – no mention of a biopsy. He visited his own GP to speak to him about it…again took is partner. Their GP has told them that he’s not sure what’s going on either, but to prepare themselves for the worst because if it is anything sinister they will be somewhat prepared. One can only draw conclusion that they must have a very good incline…although again, I may be wrong, and hope this is the case, however, true gut feeling though tells me otherwise….if they truly were uncertain - Why introduce him to a Macmillan nurse????
He appears to have gone into an overload mode, not being able to sleep at nights but during the day gets very tired, very quickly
I know it is very difficult for you to make a diagnosis based on the limited information contained within my pleas…but do you feel its cancer? More advanced than they are letting on…or could they still be genuinely uncertain?
You really don’t know how much your responses have meant to me…..you’ve been my silent angel and the answer to my prayers… Again, thank you so, so much for your help and time.
The protein retention testing you described is distinct from alpha fetoprotein.
However, if the biopsy was dismissed - I could think of two scenarios. The first is that the blood test was performed already, and hence the biopsy was deemed irrelevant, because the diagnosis is made.
The other scenario is that the liver problem is difficult enough, so if the cancer is indeed confirmed - management would not change, as support of liver function is the only thing that can be offered. This is because treatment options directed at defeating cancer (if it in fact exists) will not be tolerated by a failing liver.
And yet I find odd the comment: that the liver was expected to heal.
I think there is some problem with communication somewhere. I'll be the first to admit that physicians do have some problems with communicating uncertainty as this is interpreted as a weakness on their part. However, I've always found most patients appreciating this acceptance of my limitations during discussions (Then again, I've always been too talkative hahaha).
Regarding the MacMillan nurse, I am not sure if they also handle chronic diseases outside cancers (and there I go accepting my limitations again, hahaha).
Try to stay positive, and try to find where the communication issue is faulty. Bear in mind, that everyone involved is for the patient.
Again, thank you so much for taking time to respond to my continual bombardment of questions. It is so reassuring to have someone like you (Hey! there are such things as angels! ha!) to turn to at the click of a button and at times when you feel lost and bewildered by what or what is not happening.
I think it is so important to have an MD. (GP here -I think - though' not very often some would say! Ha!) that exudes warmth and as far as is possible truth and honesty. Which again, I thank you for, somewhat of a distinct failing in this country. If GP’s would only understand, it is not necessarily what they say that leaves their patient in fear and devastation, it’s the things they do not say but imply that present the greatest fear of all. There appears to be a lot of passing the buck from doctor to doctor here, all rowing boats in different directions rather than rowing together as a team.
Getting back to my brother (Female failing I’m afraid – going off on different tangents before getting to the point) ….he is not bedridden but very active obviously within limitations of his swollen legs and whilst the outcome is not looking too rosy from which ever angle poised, I am still trying to stay positive (currently have my fingers crossed). Where there’s life there’s hope.
You have been such a help to me. I hope you will allow me to dip in and out of this page as and when required, if ever I feel frightened, need reassurance, reality check if his next visit to the consultant confirms the worst (though can’t promise I can wait that long! Ha!) or just to let you know the outcome, that is, if you are interested?
Thank you so much yet again.
My kindest regards
I have too many sins frequently remembered so I'm pretty sure I'm not an angel but I know I'm always interested.
Feel free to post anytime you feel like, whether or not things seem unclear simply because there are tears in your eyes or if the information you receive appears as substantial as smoke.
Sure, there may be tangents, but what is beautiful is that everything is connected, so in the end - there are no minor roles, there are no small things.
I have been praying so, so hard and did not think I would need your shoulder to cry on quite so soon …however, that was not to be because the little shadows have just suddenly turned into gigantic black storm clouds, my tears like torrents of falling rain ….
….……my brother visited the admissions hospital the other day (just a social visit) and happened to bump into one of the Doctors whom he was under whilst there. She apparently was so pleased to see him because it was the first time she had seen him following his discharge and told him how well he was looking.
She then went on to say that she wanted to put his case into the medical journal as his was such an unusual and rare case. Nobody had ever witnessed or experienced such baffling symptoms. She taken the thought it to a higher body and the professors at the hospital pulled rank. As she was only a mere Dr took it from her - despite it being her idea. She then asked if he minded having some photos taking and he gladly obliged.
As they were chatting, he told her about the suspected cancer diagnosis and she was completely shocked. She told him that she had also seen the shadows but after long study of the MRI scans (3 in all) together with the extensive blood tests carried out, cancer was then dismissed, as there was nothing in any of the test results to suggest otherwise and told him not to worry too much about it.
In addition, as previously mentioned, he had been to a top liver specialist 80 miles away who also said he was doing so well and his liver could very well regenerate itself.
Following the last MRI (4th) he was called into see the consultant (previous post), he was told not to worry that it could be many things but also as previously mentioned a Macmillan nurse was present. In their words, cancer is such a big word that the mention of this mere word frightens people. He had many options open to him and they had sent a copy of the report to the specialist and scheduled to see him on 11 February for those options.
Today he made a visit to his own GP; I understand he had an abscess appear in the groin region. His GP said he was pleased to see him but his face appeared quite sullen…my brother commented as such…His GP then went onto say how very uncanny it was and that he was glad he’d gone in…he’d received a letter this morning from the specialist saying they were cancelling the Feb appointment!
My brother then apparently said to the doctor “you’re trying to tell me I’m dying aren’t you” to which his GP replied, “I’m so sorry yes I am”. His GP then went onto say I cannot understand it….one moment they are saying one thing and the next, something else
He then went onto read my brother the letter stating that they had had a meeting to discuss his case and with all the scan results and test results, in their opinion the shadows in his liver are very cancerous and that it is in his blood, so there is nothing they can do…
I am still telling him to keep positive, whilst I….in absolute bits, very powerless and alone, I have started planning the funeral, grieving. Tears are blinding my eyes and my heart feel like lead. Where did it all go wrong and why? Why were there so many miss-diagnoses? Could they possibly still be wrong? How long does he have?
I want to scream at the world….
I am quite at a loss for words.
I think this is exactly the problem when patients are not managed by a team (well actually they did meet, but too many individual opinions have provided more anxieties than reassurance for too long). I think the main problem was not with your brother failing to communicate with his doctor, but communication failure between the different doctors involved.
Maybe it is also that natural tendency among anyone in health care to try and dispel any anxieties without hearing them out at length. I can now easily imagine your brother meeting one doctor (who only had knowledge that the liver seemed fine) and your brother asking about the liver problem and just when he is about to say "I'm still waiting for Dr. JohnDoe's opinion about this test so and so" the doctor cuts him off with the knee-jerk reaction and say "No, you're fine".
I think one of the tragedies here is that I am more inclined to believe the letter more than the word of any of the doctors (as it was committed to paper).
Its very hard to estimate how much time he has as I still don't know exactly what he has - that comment that it is in his liver and now it is in his blood is not very clear to me. If he does have liver cancer not amenable to any therapy - then I would estimate
it to be about half a year (this means he'll have a 50% chance of making to that mark).
Try to focus on the quality rather than the quantity of time.
I would recommend screaming if it would help you reach acceptance.
Once again, I feel as though I truly need your shoulder upon which to cry!
You my recall, the problems encountered with my brothers miss-diagnosis and how all the medical fraternity involved with his illness gave him the run-around! After lots of “untruths” in trying to cover their failings or inadequacies, my brother’s final diagnosis was given as Hepatocellular carcinoma, prognosis terminal =12+ months.
That was just 5 weeks ago and very characteristic off the complete medical profession involved with all of his miss-diagnosis, feet shuffling and passing the buck. His face is getting so very thin, drawn & yellow, his body exploding outwards due to lymph edema and n the speight of four weeks he has gained approx 10-12 inches on his waistline and his legs look like the elephant man. He is getting very weak and tired due to the weight of the swelling and appears to be going downhill very fast! Sadly, unlike the US, nobody appears to be doing anything, not even the basic duty of care that every human being is entitled to receive!
God on his side, he was able to make his wedding last week. However, his weekend the marriage blessing is due to take place but currently looks like it will not be able to go ahead due to my brother feeling so weak and ill!
Just yesterday, they (brother and wife) were forced to call an emergency medic, as his own GP seems to have abandoned him, who gave him tablets in order to try to reduce fluid retention and others to reduce pain experienced in his chest and side. The medic put the pain down to fluid now having reached his lungs that in turn is pressing against his chest cavity causing pain. He left informing them he was going to contact the local hospice himself so that they could monitor his drugs. He also told them; whilst my brother felt he was able to cope, he would not have to go in????
So from being given months to years, it appears now to me to be just weeks even days!!!
Is this the beginning of the end?