Liver cancer and Covid- urgent request

Liver cancer and Covid - Urgent request

Have you been diagnosed with liver cancer or do you have liver disease and are worried about missing your regular screening (surveillance) for liver cancer? Vanessa Hebditch, our Director of Communications and Policy is attending an event where she will be speaking about patients concerns and would like to hear from you.

How have you found accessing treatment for your cancer during Covid?

Did you have appointments in the hospital or were you contacted by phone/video?

Have you had your six-monthly ultrasound surveillance and tumour marker blood tests taken place during coronavirus?

Have you had any treatments for liver cancer ?

Has your liver cancer team been in touch?

Are you worried about a second wave?

How satisfied have you been with your care?

Please email [e-mail] with a note about your experience. Your responses will be anonymised and remain completely confidential.

[Mama41]

I have liver cancer.

I had a scan at the end of February,didn’t have blood tests done as no reply from CNS when I emailed them to ask if they had been out on the system.

Took 6 weeks to get the results (an unacceptable amount of time for a cancer patient to wait for results)

My next scans were due in August,a liver MRI and a chest CT. MRI appointment came through but no chest CT. Still no blood tests as when I went to get them done after my scan they hadn’t been requested and there was no one in the liver dept to order them.

MRI results took another 6 weeks to come through. Spoke to CNS who said I should get an appointment in February for both MRI and CT unless of course anything happens over the winter....So it would seem if there is a second wave then once again Cancer patients will be forgotten about.

I’m not concerned with getting Covid but am concerned with the poor care cancer patients have been getting since March.

By the time I have my blood tests done in February (if someone bothers to request them) it will be 18 months since I’ve had any blood tests. My GP is currently not open for blood tests or much of anything for that matter.

Im fortunate my scans are currently stable and I only require 6 monthly monitoring.

I have also emailed this.

[Hidden in reply to Mama41]

Thank you for taking the time to share. We are so sorry to read about this. I will ensure that our director of communications sees this, she is meeting cancer and NHS leads this week so this feedback will be crucial. I hope that you can access your specialist teams to get the care you need- can you perhaps contact PALS?

Our amazing nurse Gill is working on the helpline today, she was a nurse specialist in liver cancer. If you would like a general chat ( she cannot provide specific medical recommendations) then please call her today. 0800 652 7330 10am to 3pm

[Mama41 in reply to Hidden]

I will wait until my next scans are due in February before I think of contacting PALS.

I’m hoping things will have improved somewhat by then.

I have thought of going private for my scans and if things continue as they are I probably will.

Thank you for your reply.

[micaphoo]

I have cholestastis caused by being given too many antibiotics for a continual cystitis problem. I have had CT and MRI , endoscopy and ultrasound BUT my surgery has been closed down and I have not seen anyone since MARCH , my specialist answers my questions by post, but Although I had telephone contact from my DOC during my worst symptoms she has not made contact with me since July.

Appalling service from our GP,s . I am near Northampton which has suffered with Covid 19 so there is some excuse for their shutdown.

I still have high ALP and and still having blood tests but am afraid every time I have to visit hospital because of the pandemic.

My only other treatment has been granules for my billiruben , my urine was coca. cola. coloured and my jaundice and billiruben lasted 9 weeks.i have rampant vitiligo which I am being seen at the hospital in November. Although I have had slight vitiligo for some years it suddenly changed in June.

I do feel anxious but joining the Liver Trust has helped me and I have a better understanding of my condition.

[Hidden in reply to micaphoo]

Thank you for your reply. Would you consent to me sharing this with our communications team to feed back to the NHS about patient experience?

If you would ever like a chat about your conditions, our nurse led helpline is open.

We are pleased you find the forum a supportive place to visit.

Trust1

[micaphoo in reply to Hidden]

Yes. I am happy to help.

[Hidden in reply to micaphoo]

Thank you.