Unsure of prognosis: I am unsure of how... - British Liver Trust

British Liver Trust
21,011 members11,116 posts

Unsure of prognosis

Coralsun
Coralsun

I am unsure of how bad my liver disease is or my life expectancy. I can't always make out my consultant and actually not that comfortable with him. At the end of last year I had an ultrasound as I had ascites and was called in the next day as they thought I had liver cancer. I had blood test which showed high cancer markers for ovaries, bowel and pancreas. This was quickly followed by a ct and mri. No mass was found and was told there could be other reasons for the high markers which included cancer not visible yet. That was in January and I next saw my consultant in April. I had a further mri in June and was to be seen in July. I didn't see him until November and he said my bloods were improved albeit they were from April. I have another ultrasound next week. Previously he had mentioned seeing specialists in Leeds but made no more mention of it. I never get my blood results and I'm wondering if anyone can tell me if they are helpful. I would just like a better idea of my situation and would appreciate any advice from anyone in a similar place.

13 Replies
oldestnewest
Hidden
Hidden

A suggestion would be to speak to your GP, you should have received copies of the updates sent from the Consultant. This will have the information regarding your condition. You should explain how you feel about your current consultant and ask for an alternative. You can request a direct referral to St James’s in Leeds. Stress certainly will not help with your health.

The liver clinic I attend always give the impression that they do not wish to freely feedback the summary report from my 6 monthly HCC scan and blood works. Any possible symptoms I report are pretty much ignored or explained away as something completely irrelevant. You can get the reports from your GP who has to give you the original summary under the data act. My GP is more than willing to send and I am happy with this arrangement.

I have the same experience with my gastroenterologist. He never really answers my questions and behaves as though I shouldn't be asking! My GP is much more forthcoming, thank God.

Hi there. As Snoutie says your GP will have received the update from your consultant and will be able to give you the information you want. It's always good to know your blood results because you can look up the relevant scales and see exactly where you are on them. It's always handy to write a list of questions when you see the consultant as you are normally quite overwhelmed by the meeting and your mind is all over the place. They are usually very informative when asked about your medical condition. I think that sometimes if you don't ask they assume (in most cases wrongly) that you will not understand any of the medical terms they use in reply and as they are busy people they move on to the next patient appointment. Wishing you all the best. Alfred.

Hidden
Hidden

Not sure how it works everywhere as far as access to your blood tests. In Canada we have online portals we can sign up for and view our results. For example when I get a lab test done at the local dynacare centre I go on to the dynacare website and sign into my account and view them. Ask your lab where you get the tests done if they have an online access for you to see.

My daughter had the same scare last year. There is a particular number in bloods that indicate cancer. She was terrified as we all were. She was told its possible the large cyst she had was cancerous.Antigen 125 A few weeks later the reading was normal. She needed major surgery of course for a dermoid cyst, but ovarian cancer is another silent disease like cirrhosis. This could be the same in your case. They dont hide cancer results anymore. As others have said ask your GP , it sounds like it was a false positive like my daughter Hazelx

Coralsun
Coralsun
in reply to Radnor

Hi there I'm pleased to hear that your daughter didn't have cancer, it's a scary place to be. When I was told the scan picked up no mass they said it maybe there but not visible. I couldn't get my April blood results despite trying. Finaĺy I was told on 9th November when I attended gastro clinic. It leaves you in limbo but I am resolved to being more insistent in the future. Thanks for your reply and best wishes to you both.

Radnor
Radnor
in reply to Coralsun

One of my closest friends had 3 lots of surgery told she definitely had cancer. She lost her business and had to tell her children. Another friend asked was it a YTS who did her ops? We were all so relieved she had no cancer! She sued them , the stress and heartache was enormous. Less likely to happen hopefully now with MRI scans etc, A 2 hour round trip is worth it if you see a fantastic consultant. Some vets are better qualified than those at this local hospital. Your right to ensure you get answers, my GP surgery always give me copies of any letters I miss.I rang the surgery yesterday to ask my thanks be passed on to the GP who did as I requested. x

Hidden
Hidden

Hi coral

Have you had your USS yet?

Miles

🇧🇧

Coralsun
Coralsun
in reply to Hidden

Hi. I don't know what that is I'm afraid. Coralsun

Hidden
Hidden
in reply to Coralsun

UltraSound Scan 😁

Coralsun
Coralsun
in reply to Hidden

Oh ultra sound is it. I get that on Thursday. A slow coralsun

Hidden
Hidden
in reply to Coralsun

Lol no coral - too many abbreviations - sorry!

Miles

You may also like...