Email from the British Liver Trust to say my 'story' has now gone onto their website.
www.britishlivertrust.org.uk/home/the-liver/liver-diseases/liver-cancer/real-story-fionas-story.aspx
For the last 4 months I've been a member of 2 online cancer forums and 2 online hepatitis forums.
I've met some lovely people amongst the 3,000+ members on the cancer forums, but though some have secondary liver tumours, nobody else has primary liver cancer.
On the hepatitis forums, which have around 2,000 members, I've been in contact with 2 people treated for HCC liver cancer - one in the US and one in Australia.
47,000 are diagnosed with breast cancer in the UK each year and many women write breast cancer blogs. Compare that to 3,400 diagnosed with primary liver cancer (about 1% of all UK cancers) and I've yet to find another blogger (although I do follow 2 transplant blogs neither are cancer patients).
In spite of the Liver Trust website there is relatively little patient experience information and support for HCC. Long term survivors telling their stories online seem to be rare. It seems a combination of no standard "chemo" or "radiation" treatments for HCC, like there are for other cancers, and the small number of survivors makes for a lack of information resources.
The success of treatment for all cancers is usually measured in 5 year survival rates, being the period at which it is less likely to return.
Of the 2 people I've 'met' online diagnosed with HCC one has survived 3 years but has a recurrence and the other has survived 5 years with zero recurrence. I've not yet met anyone online who is a >5yr survivor.
Survivor (1) had a resection in 2007 of a 6cm x 12cm tumour (about the size of a large pear). Sections 2 and 3 of their liver were removed (that's about 1/4). Like me they have compensated cirrhosis. Their AFP was elevated 20 months later but it was 3 years (2010) before identifiable new tumours appeared. By 2011 there are 5, and as they are spread throughout the liver resection is not an option. Treatment is TACE chemo.
Survivor (2) had a resection in 2005 for a 1.5cm tumour (grape size same as mine). All of section 6 removed. Compensated cirrhosis. Slightly elevated AFP consistently. No evidence of a recurrence after 5 years.
A 3rd resection patient on a cancer forum had surgery in 2008 for a 22cm tumour (Very large Fibrolamellor - longer than a banana! But not HCC)
Mets in lung 2009; Recurrence within 2 years in lymph node 2010; Removal of lymph node 2011.
Of 2 others whose blogs I follow. (1) has survived 3 years on repeated treatment for metastatic liver cancer (primary is colon). Current treatment regime is SIR Spheres (a form of radiation used in the US but not so common in the UK)
and (2) Has liver mets from a 2009 diagnosis of bowel cancer. Palliative.
Stiffness diary
9am. Legs ok but feeling a little weak. Neck more mobile. Shoulders and upper back ache slightly but not too bad. Thumb joints on both hands painful.
www.britishlivertrust.org.uk/home/the-liver/liver-diseases/liver-cancer/real-story-fionas-story.aspx
For the last 4 months I've been a member of 2 online cancer forums and 2 online hepatitis forums.
I've met some lovely people amongst the 3,000+ members on the cancer forums, but though some have secondary liver tumours, nobody else has primary liver cancer.
On the hepatitis forums, which have around 2,000 members, I've been in contact with 2 people treated for HCC liver cancer - one in the US and one in Australia.
47,000 are diagnosed with breast cancer in the UK each year and many women write breast cancer blogs. Compare that to 3,400 diagnosed with primary liver cancer (about 1% of all UK cancers) and I've yet to find another blogger (although I do follow 2 transplant blogs neither are cancer patients).
In spite of the Liver Trust website there is relatively little patient experience information and support for HCC. Long term survivors telling their stories online seem to be rare. It seems a combination of no standard "chemo" or "radiation" treatments for HCC, like there are for other cancers, and the small number of survivors makes for a lack of information resources.
The success of treatment for all cancers is usually measured in 5 year survival rates, being the period at which it is less likely to return.
Of the 2 people I've 'met' online diagnosed with HCC one has survived 3 years but has a recurrence and the other has survived 5 years with zero recurrence. I've not yet met anyone online who is a >5yr survivor.
Survivor (1) had a resection in 2007 of a 6cm x 12cm tumour (about the size of a large pear). Sections 2 and 3 of their liver were removed (that's about 1/4). Like me they have compensated cirrhosis. Their AFP was elevated 20 months later but it was 3 years (2010) before identifiable new tumours appeared. By 2011 there are 5, and as they are spread throughout the liver resection is not an option. Treatment is TACE chemo.
Survivor (2) had a resection in 2005 for a 1.5cm tumour (grape size same as mine). All of section 6 removed. Compensated cirrhosis. Slightly elevated AFP consistently. No evidence of a recurrence after 5 years.
A 3rd resection patient on a cancer forum had surgery in 2008 for a 22cm tumour (Very large Fibrolamellor - longer than a banana! But not HCC)
Mets in lung 2009; Recurrence within 2 years in lymph node 2010; Removal of lymph node 2011.
Of 2 others whose blogs I follow. (1) has survived 3 years on repeated treatment for metastatic liver cancer (primary is colon). Current treatment regime is SIR Spheres (a form of radiation used in the US but not so common in the UK)
and (2) Has liver mets from a 2009 diagnosis of bowel cancer. Palliative.
Stiffness diary
9am. Legs ok but feeling a little weak. Neck more mobile. Shoulders and upper back ache slightly but not too bad. Thumb joints on both hands painful.
Evening: Have driven around 20 miles today. Also ate not very healthy slice of cream cake (with client) and small MacDonalds salty fries. Felt very unwell in bed - feverish and aching all over. Painful shoulders, knees almost completely seized up.
Woke up Friday morning and everything has cleared up!
Hi, hope you are still on here. I am a 4.5 year survivor of HCC with no identifiable risk factors. I intend to blog about it at some point in time. Let me know if you get this and I can tell more. ming
ReplyDeleteHello 'ming'. Yes I am still blogging. You should be able to find my recent posts by clicking on the blog archive date for August 2011, it's up at the top of this page on the right.
ReplyDeleteYes I would be very interested to hear more of your story and to know what the 'identifiable risk factors' you mention are.
A blog would be great for others in the same position. In the meantime I'd be delighted to dedicate a post summarising your story in the form of an up-to-date post on here, if you would like that.
Fiona
Fiona