Liver tumours

[Elverra30]

Hi

I have three tumours on my liver, one is thought to be a focal nodular hyperplasia and the other two haven't been identified.

I'm in constant pain, which is in the upper right side of abdomen and I have pain under my right shoulder blade.

Currently waiting for consultant appointment, been in pain since May 2022. It took three MRI scans to get a clear enough image as contrast dye was needed and my veins aren't obliging!

Has anyone had a similar situation? I'm very fed up of the pain and am worried about the situation.

Thanks

[AyrshireK]

Do you have the consultant's details? Could you try phoning his/her secretary to try and get an appointment. You need some clarification on this and soon. Sometimes results and patients get lost in the system and you potentially need to become a bit of a 'squeaky wheel' to get the attention you need.Your GP could try pushing for you too but if you have no joy then contact and make a fuss with PALS (Patient Advice and Liason Sevice) at hospital.

Katie

[Elverra30 in reply to AyrshireK]

Hi Katie,

Thanks for your reply.

After some chasing, I got through to a hepatibiliary secretary earlier this week. I haven't been assigned to a consultant yet, but they said that it looks like the appointment should be towards end of February/ early March. Also that they'd look to checking cancellation availability for me.

Part of the issue has been that my GP thinks the pain is due to adhesions and doesn't overly acknowledge the problems with my liver. I have had my gallbladder and appendix taken out in the last two years, so GP thinks adhesions could be there because of those ops.

Luckily when gastroenterology got the referral, they sent it to hepatibiliary as it was more appropriate.

I shall phone the secretary again to check about cancellation. I told them I'm worried that my GP doesn't seem bothered about it and almost dismissing it. I'm so glad the gastro consultant passed me on to hepatibiliary.

[She-66]

I would get back on to your consultant . A scan found something on my liver in December. An inconclusive CT , MRI then another CT since then. Seen the liver nurse and waiting consultant appointment. Get onto them until you hear back !!

[Elverra30 in reply to She-66]

Thank you, it seems many people have to have a few scans before getting a conclusive image.

I haven't seen a liver nurse but spoken to them, having more knowledge has helped me as been able to make a few points with my GP.

I shall get back in touch with the secretary, I haven't been assigned a consultant yet but she said appointment should be towards end of Feb or early March.

How are things going for you now?

[She-66 in reply to Elverra30]

yes hound them!! They initially thought I had liver cancer , then maybe bile duct cancer but they’re not sure . I’ve been transferred to the liver unit in Newcastle. Such an anxious time waiting but it’s no where near as long as you’ve been waiting . Don’t know how you’ve coped . It’s the not knowing that’s got me . If I know what’s wrong i can deal with it . I hope you get answers soon

[Elverra30 in reply to She-66]

I agree, the not knowing is the worst thing. I'm glad you've have been seen to a bit quicker and are under Newcastle specialists. Hoping the best for you.

I am at the end of my tether with it, I'm so fed up and felt like GP not listened enough. I shall phone again this week coming.

Thank you for supporting

[Chick_atee in reply to Elverra30]

I totally agree with the not knowing. Personally if I am mentally prepared for something that may or may not happen with the disease than I’m not worrying as much and stressed out about it.

Stress and worry certainly make me feel more ill (affecting eating, sleeping etc) which further leads to worsening the condition I think. A positive mindset is vital.

Hopefully there will be a change in the near future about the lack of information given when diagnosed. The more information we have the better equipped to deal with it.

Stay positive and keep going!

[Mama41]

Keep chasing them until you get an appointment. I was diagnosed with FNH after a CT, MRI and US. it was only after surgery to remove the tumour that I was diagnosed with liver cancer.

The sooner you get a definite diagnosis the sooner you can get treatment.

[Elverra30 in reply to Mama41]

Hi,

So was the tumour cancerous or did they find other signs of cancer?

Hope you are doing okay

[Mama41 in reply to Elverra30]

The tumour was cancer. A rare form of liver cancer. Luckily it hadn’t spread so was removed.

It can often be mistaken for FNH so best to get it diagnosed asap.

[Elverra30 in reply to Mama41]

Oh gosh, thank you for the information and I am very glad it had not spread. How are you doing now?

I shall phone on Monday as I don't think secretaries are in over the weekend.

[Mama41 in reply to Elverra30]

I’m doing ok thanks.

If you don’t manage to get an appointment date in the next week or so you can go through PALS at the hospital. I’ve used them recently to get scan results and they were excellent.

[Elverra30 in reply to Mama41]

Pleased you are doing ok. Thank you for your help and support