Hello,
My name is Mark, a 61 years old male living in London and I found out 4 days ago that I have liver cancer. Not totally unexpeccted, but a shock nonetheless.
I was diagnosed with Hep C is c 2007/2008 and subsequently took part in 3 clinical trials beofre drugs were developed that cured me of the virus about 7 years ago, but the damage to my liver was already done, with cirrhosis.
What is most upsetting about this is that the ultrasound tests and CT scans that I've had this year were not reviewed quickly enough by the NHS imaging teams and what was a 1cm lesion has now grown into a 3 cm lesion very quickly.
This, I have just found out, means that radiological treatment is no longer an option for me and that I require much riskier, invasive surgery. BUT because I have a cirrhotic liver this may not be an option either depending upon where I am on the Child-Pugh scale in terms of whether there is enough functioning liver left for some to be removed via surgery. It's a cleft position.
I feel so angry and let down by the NHS and don't know where to turn. I feel utterly powerless, that my future is out of my hands and now fully expect the Hepatology/surgical team to around and say that the delay has made any kind of treatment futile because the cancer has become inoperable.
This is frightening and driving me crazy.
I have a CT scan booked in for this Friday 4th July but now have little faith left in what the NHS is capable of doing given what has transpired this year.
Can anyone provide me with words of comfort or a glimmer of hope, please?
Thx, Mark
Hi Mark Johmar12 and a very warm welcome to the Macmillan Community but sorry to hear about your journey to date.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Liver Cancer Support Group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….
……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
