Hello everyone. I don't usually write on here,{seem somehow shy!!!} but I read all the posts and have learned so much. My question is, am I "entitled" to a six monthly scan? I have cirrhosis and I think I am being fobbed off when asking why I have not yet got an appointment for my November scan. I am sure my hero Katie will have the answer if not loads more of you brave people. Hope today has been a "good" day for you all.
Jacquie
Hi Jacquie, how long have you been diagnosed with cirrhosis and have you had scanning to date? NICE (National Institute for Health and Care Excellence) Guidelines state the following as regards 6 monthly screening.
"Adults with cirrhosis are offered 6-monthly surveillance for hepatocellular carcinoma.
Rationale
Cirrhosis is a substantial risk factor for hepatocellular carcinoma. Hepatocellular carcinoma develops quickly and may be asymptomatic until it is advanced. Regular surveillance of adults with cirrhosis at 6 month intervals helps to ensure that it is detected early. Treatment can then begin promptly, which can improve the person's chances of survival."
Therefore YES you should be getting at minimum a 6 monthly ultrasound scan, a six monthly assessment of your MELD/UKELD score plus a blood test called Alpha-Fetoprotein (liver tumour marker).
It might be that your hospital works on a month by month list for such things. I know that my hubbies next ultrasound is due in November and we don't have this appointment yet. We do know that it was ordered by his consultant in June and it sits on the X-Ray department list until late October / November arrives and it then gets scheduled - you could always ring the X-ray/radiology department to see if they have notice of your referral.
On several occaisions we have also in the past found that scans haven't been ordered and have then had to chase them up via consultants secretary. I've even written letters in the past seeking this scanning - that way the letter is in your file and not easily ignored. NICE states you should be getting this scanning so don't be fobbed off.
All the best,
Katie x
Thank you Katie. My NASH developed into cirrhosis about two years ago and I have been well looked after with regular blood tests and scans. My last was a CT scan in May. When I saw my gastroenterologist in August he said he had programmed for a scan in November. I do take my care into my own hands and keep a file on everything and do a lot of chasing {and pushing.) I think this time it may be a bit of the right hand doesn't know what the left hand is doing, as the Ultra Sound dept has no request on record and my gastro's secretary says I'm scheduled a CT scan in January! I am not happy to wait the extra two months (or more) for a scan. I plan to get hold of the secretary again on Monday or Tuesday to sort it out.
Thank you for your quick response. I do hope your hubby is still doing well, and enjoying life.
Jacquie x
Well done you on being proactive, it's what I've had to do since day one when hubby never got a follow up appointment after his initial hospitalisation and biopsy. I've just had to do a bit of gentle pushing this past week when hubbies consultation (due November) was cancelled and rescheduled for April. We are not too bothered about consultation because there isn't much new to report but what annoyed us was the blood monitoring which would have been done then - last bloods taken June 2018, not now due to see local consultant until April 2019 and Edinburgh clinic June 2019. His monitoring seems to be sliding all the time. He's gone from every 5 weeks whilst on t/p list to supposedly every 3 months - Ayr/Edinburgh/Ayr/Edinburgh but even that has slid - this year we ended up with seeing both consultants in the one fortnight in June, now nothing until April 2019. I managed to get GP practice to do bloods but I actually had to ask and explain which specific bloods we wanted/needed done. I will not let my hubby become a dusty file on the shelf that no one gives a jot about.
Like you say you don't want to wait 8 months for scans that should be done every 6 months - hopefully it wouldn't make too much of a difference but would doctor risk it if it was him/her bearing in mind what exactly the scan is looking for.
Hope you get sorted this week and you get that earlier appointment.
All the best, Katie xx
Hi Katie
I may have missed it, so I’m sorry if I have, but has hubby had a t/p, is on the t/p list or was on t/p but now taken off? Thanks.
Miles
🇧🇧
Hubby assessed and listed for transplant June 2014 but delisted in May 2015 - his blood tests improved following and embolisation operation which killed off his spleen so portal hypertension, blood clotting and platelets all improved. Now back at the watch and wait.
Katie
You should have 6monthly checks hun! Fibro scans every 6 month or at least an ultra sound. Dont let them fob you off. Ive had to have 2 this year one feb and one aug next ones due in feb again and you should see your consultant a few weeks after your scan and bloods.
Thank you Maria2004 I shall get on to it tomorrow. Hope you have a good Sunday. Jacquie x
Fibroscan's arn't done as routine and the 6 monthly monitoring is to check for signs of HCC and other issues. Fibroscan is a diagnostic tool to look at liver thickening. Hubby has never had a fibroscan in all his 6 years with the condition. He does have ultrasound every 6 months.
Katie
Fibro scan
Hida scan
Dexa scan results 
Recent scan results
MRV Scan
