A message from our Chief Executive regarding Hepatocellular Carcinoma (HCC), a primary liver cancer.

Dear all

This is an invitation from the British Liver Trust to join in the First International Survey of People Living with Hepatocellular Carcinoma (HCC), a primary liver cancer.

Results will provide doctors and cancer researchers with insights to improve liver cancer treatment now, and in the future.

The British Liver Trust has recently joined a special partnership of similar organisations across North America, Asia and Europe in an effort to ask hundreds of men and women like you to share your experiences by responding to the first-ever international survey of people living with HCC. Our hope is that the results of this survey will provide doctors and cancer researchers with some of the insights they need to improve liver cancer treatment now, and in the future.

The survey is on-line and you can access it at hcc-voices.com/uk or hcc-voices.com . Please know that your personal information and opinions will not be shared with anyone. The survey will be available on the web until 31st December 2016.

In addition to the British Liver Trust a number of other liver cancer groups are taking part in the survey. These include: the American Liver Foundation, Blue Faery – The Adrienne Wilson Liver Cancer Association, the Canadian Liver Foundation, the European Liver Patients’ Association, the Taiwan Liver Cancer Association and a number of liver cancer treatment units in major medical centres around the world. The survey was developed for these organisations by the research company, Strategic Sight, which will analyse the results in collaboration with the Medical Technology Research Group of the London School of Economics, with an unrestricted educational grant from Sirtex.

The results of the survey will be made available early in 2017, in the form of a report from the London School of Economics and the participating liver cancer groups. The survey findings will be made available to liver research organisations, scientific journals and the media.

We will also provide you with a personal copy of this report, so that you can compare your observations with those of the others who took part in the survey.

We hope that you will find a few minutes to take part in this important survey. A great deal is at stake.

Thank you and very best wishes

Andrew

Andrew Langford, Chief Executive, British Liver Trust

[Mama41]

What about Flhcc? Is that included?

[Hidden in reply to Mama41]

Dear Mama41

We are sure that contributions from anyone with FLHCC would be helpful so please do feel free to complete the survey.

Best wishes

Carol

[KT60]

I tried to complete survey form but when it came to treatment tick boxes i couldnt go any further. my husband isnt receiving any treatment i ticked no treatment and couldnt progress any further kept on going back to treatment page.

[Hidden in reply to KT60]

Thank you for letting us know - I'll pass that on.

Best wishes

Carol

[Mama41]

Question 3 asks what type of liver disease did you have before being diagnosed with HCC? There isn't an option for none..

[Hidden in reply to Mama41]

Thanks Mama41 I've passed that on.

Best wishes

Carol

[carmik]

Thank you for the invite.Fortunately my husband wasnt found to have hcc until they got to transplant. Then found it was full of tumours .

Was actually outside the criteria for a transplant but too late for them to turn back.

Hence luck of the draw.

Now nearly 5 years no recurrence.

So we were never actually affected by this dreaded cancer.

We just assumed he was very ill due to the A1AD cirrhosis.

Hope you get many takers for the survey

Carole

[Hidden in reply to carmik]

Thanks for your comment and good wishes Carmik.

It's great to hear that your husband was lucky enough to receive a transplant and is doing so well.

Best wishes to you both.

Carol

[soleman08753]

Hi I am on the east coast of usa New Jersey I am being treated for HCC I hace had 2 chemo embolisims one on each side of my liver I would like to Participate... what should I do?

[Hidden]

Dear Soleman

This is a multi national survey and so I am sure your input would be welcome - do please try completing the survey by clicking on this link and then selecting the American flag:

hcc-voices.com

The survey is now open until the end of March 2017.

Best wishes

Carol