Differences in prognosis - UK vs USA

yatesyuk
yatesyuk Member Posts: 2
edited March 2014 in Colorectal Cancer #1
Hi, my name is Stephen and from the UK, my dad, 60, was diagnosed with bowel cancer july 09, currently receiving XELODA as it had spread to 2 lymph nodes.

I read this site a lot, because the survivor's stories give me hope that he'll get through this and live long enough for my kids to know their granddad. My only concern is that this is 99% US residents, and the UK based board I visit doesn't seem to have the same success stories as this one. Also, the oncologist said to my dad there was a 50% chance of recurrance, yet on here this doesn't seem to be the case.

As I said my dad's on xeloda by roche so the treatment is the same. I understand Irinotecan is also available for if xeloda doesn't work. So why the difference?

One thing I do know, and something that angers me greatly, is that avastin isn't available in the UK on the national health service (which we all including my dad pay into all our lives, like you do in the US with health insurance), which utterly outstounds and angers me that a economically rich country like the UK isnt willing to fund it. Also I've read a lot about things like cyberknife which again isnt supported.
Perhaps it's down to early diagnosis? Yet I see many on here were diagnosed at stage IV yet still survive.

Is there anyone out there know why there is such a difference in the statistics?

Thanks for reading, and continue posting your positive news, it helps so much!

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #2
    Stephen
    I assume your Dad is Stage III since you mention 2 lymph nodes but do not mention liver or lung involvment.

    The 'stats' for Stage III recurrence without chemo IS 50% at age 60. Chemo adds another 20-30%. I was dx'd at age 58 and was told I had a 75- 80% chance of being disease free at 5 years with chemo.

    WHY is your Dad only getting Xeloda? That's the same as 5FU except in pill form and that was standard treatment 40 years ago! Oxi added to 5FU is FOLFOX and is the industry standard for Stage III for the last couple of years, raising survival stats.

    Avastin is only for Stage IV. Irinotecan is generally given with Oxi and is called FOLFIRI.

    Stephen, take into consideration that generally once people get good news or reach 5 years, they put cancer behind them and don't continue posting. This board is more 'family like' so the old timers check in and lift the spirits of those who are struggling or scared.


    If I am counting right, we've had 10 deaths since November on this forum and several very ill people have disappeared, which makes me wonder.
  • yatesyuk
    yatesyuk Member Posts: 2
    #3
    dianetavegia said:

    Stephen
    I assume your Dad is Stage III since you mention 2 lymph nodes but do not mention liver or lung involvment.

    The 'stats' for Stage III recurrence without chemo IS 50% at age 60. Chemo adds another 20-30%. I was dx'd at age 58 and was told I had a 75- 80% chance of being disease free at 5 years with chemo.

    WHY is your Dad only getting Xeloda? That's the same as 5FU except in pill form and that was standard treatment 40 years ago! Oxi added to 5FU is FOLFOX and is the industry standard for Stage III for the last couple of years, raising survival stats.

    Avastin is only for Stage IV. Irinotecan is generally given with Oxi and is called FOLFIRI.

    Stephen, take into consideration that generally once people get good news or reach 5 years, they put cancer behind them and don't continue posting. This board is more 'family like' so the old timers check in and lift the spirits of those who are struggling or scared.


    If I am counting right, we've had 10 deaths since November on this forum and several very ill people have disappeared, which makes me wonder.

    Hi, thanks for your reply.
    Hi, thanks for your reply. Yes he's currently (and i'm hoping always will be) stage III although he does have a single 5mm nodule on his lung which they are not sure about yet.
    And yes, sorry he's on oxi as well as the pill. So is this pairing of chemo a relatively new combination? Cos the stats we have in uk are based on people diagnosed in 2006.

    I didn't realise the 50% was the stat for no chemo, the extra 20-30% is very encouraging news to hear, thankyou.

    I worry about avastin as if he does move onto stage IV, it won't be available on the health service unless we stump up the cash to pay it which will be thousands.
  • zenmonk
    zenmonk Member Posts: 198
    #4
    stats
    Every patient is different. Progress and new treatment strategies are occuring all the time. Somethings that used to be hopeless 5 years ago or even a year ago might be treatable today and the same will be true a year from now. Statistics and anecdotal information can be helpful, but as you can see they certainly do not tell every story.
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #5
    statistics
    Stephen,
    Often statics vary depending which chemo is used and for how long. The stats for the different stages depends greatly on the people staging the cancer. There are just so many factors to consider. What you need to consider when deciding on and accepting treatment is how you respond to that treatment and if it is accomplishing the desired affect.

    After dealing with cancer for a little more than a year and reading thousands and thousands of posts on forums and many web sites about cancer, I have come to the conclusion that there are many approaches to treating the disease and people have chosen chemo, something more holistic like diet change or herbal medicines, life style fitness changes, all of these or nothing at all. There have been people on all three forums I currently follow that have had success in dealing with cancer regardless of which treatments they chose and there are some that did not. Like Diane stated some friends from this board have died, even recently, but as you have observed there are many that defy the odds, or the statistics we can so easily find.

    What I have noticed is that regardless of the treatments selected or the outcome, the journey is what seems to mostly define the quality of life often despite the physical condition of the patient. Take for example Terry G (from the UK) at http://www.uoaa.org/forum/memberlist.php?mode=viewprofile&u=28. Terry physically is a mess, but has been an inspiration to just about everyone who has had the pleasure of meeting him - even if only online. Read some of his posts and I think you can easily understand what I am talking about.

    My advise for you, given even my limited experience with cancer, is help your dad become as knowledgeable as possible about his cancer, help him become his own advocate and don't rely solely on doctors, nurses, test results, what you read on the web or from people on forums. His decisions will mostly likely determine his quality of life during his journey, not the treatment chosen or outcome of treatment.

    Very best wishes on finding and executing the right treatments for your dad.
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #6
    RickMurtagh said:

    statistics
    Stephen,
    Often statics vary depending which chemo is used and for how long. The stats for the different stages depends greatly on the people staging the cancer. There are just so many factors to consider. What you need to consider when deciding on and accepting treatment is how you respond to that treatment and if it is accomplishing the desired affect.

    After dealing with cancer for a little more than a year and reading thousands and thousands of posts on forums and many web sites about cancer, I have come to the conclusion that there are many approaches to treating the disease and people have chosen chemo, something more holistic like diet change or herbal medicines, life style fitness changes, all of these or nothing at all. There have been people on all three forums I currently follow that have had success in dealing with cancer regardless of which treatments they chose and there are some that did not. Like Diane stated some friends from this board have died, even recently, but as you have observed there are many that defy the odds, or the statistics we can so easily find.

    What I have noticed is that regardless of the treatments selected or the outcome, the journey is what seems to mostly define the quality of life often despite the physical condition of the patient. Take for example Terry G (from the UK) at http://www.uoaa.org/forum/memberlist.php?mode=viewprofile&u=28. Terry physically is a mess, but has been an inspiration to just about everyone who has had the pleasure of meeting him - even if only online. Read some of his posts and I think you can easily understand what I am talking about.

    My advise for you, given even my limited experience with cancer, is help your dad become as knowledgeable as possible about his cancer, help him become his own advocate and don't rely solely on doctors, nurses, test results, what you read on the web or from people on forums. His decisions will mostly likely determine his quality of life during his journey, not the treatment chosen or outcome of treatment.

    Very best wishes on finding and executing the right treatments for your dad.

    Rick,
    This is a great post;
    Rick,

    This is a great post; you are right about how so many different approaches can be successful. No one shares the exact same road + I am glad each person's treatment is individualized. I am glad there are many roads which can take people to NED's house!
  • pf78248
    pf78248 Member Posts: 209
    #7
    RickMurtagh said:

    statistics
    Stephen,
    Often statics vary depending which chemo is used and for how long. The stats for the different stages depends greatly on the people staging the cancer. There are just so many factors to consider. What you need to consider when deciding on and accepting treatment is how you respond to that treatment and if it is accomplishing the desired affect.

    After dealing with cancer for a little more than a year and reading thousands and thousands of posts on forums and many web sites about cancer, I have come to the conclusion that there are many approaches to treating the disease and people have chosen chemo, something more holistic like diet change or herbal medicines, life style fitness changes, all of these or nothing at all. There have been people on all three forums I currently follow that have had success in dealing with cancer regardless of which treatments they chose and there are some that did not. Like Diane stated some friends from this board have died, even recently, but as you have observed there are many that defy the odds, or the statistics we can so easily find.

    What I have noticed is that regardless of the treatments selected or the outcome, the journey is what seems to mostly define the quality of life often despite the physical condition of the patient. Take for example Terry G (from the UK) at http://www.uoaa.org/forum/memberlist.php?mode=viewprofile&u=28. Terry physically is a mess, but has been an inspiration to just about everyone who has had the pleasure of meeting him - even if only online. Read some of his posts and I think you can easily understand what I am talking about.

    My advise for you, given even my limited experience with cancer, is help your dad become as knowledgeable as possible about his cancer, help him become his own advocate and don't rely solely on doctors, nurses, test results, what you read on the web or from people on forums. His decisions will mostly likely determine his quality of life during his journey, not the treatment chosen or outcome of treatment.

    Very best wishes on finding and executing the right treatments for your dad.

    Loved your advice, Rick
    Especially "his decisions will most likely determine his quality of life during his journey, not the treatment chosen or outcome of treatment."

    Great advice for everyone!

    Priscilla in San Antonio
  • pf78248
    pf78248 Member Posts: 209
    #8
    RickMurtagh said:

    statistics
    Stephen,
    Often statics vary depending which chemo is used and for how long. The stats for the different stages depends greatly on the people staging the cancer. There are just so many factors to consider. What you need to consider when deciding on and accepting treatment is how you respond to that treatment and if it is accomplishing the desired affect.

    After dealing with cancer for a little more than a year and reading thousands and thousands of posts on forums and many web sites about cancer, I have come to the conclusion that there are many approaches to treating the disease and people have chosen chemo, something more holistic like diet change or herbal medicines, life style fitness changes, all of these or nothing at all. There have been people on all three forums I currently follow that have had success in dealing with cancer regardless of which treatments they chose and there are some that did not. Like Diane stated some friends from this board have died, even recently, but as you have observed there are many that defy the odds, or the statistics we can so easily find.

    What I have noticed is that regardless of the treatments selected or the outcome, the journey is what seems to mostly define the quality of life often despite the physical condition of the patient. Take for example Terry G (from the UK) at http://www.uoaa.org/forum/memberlist.php?mode=viewprofile&u=28. Terry physically is a mess, but has been an inspiration to just about everyone who has had the pleasure of meeting him - even if only online. Read some of his posts and I think you can easily understand what I am talking about.

    My advise for you, given even my limited experience with cancer, is help your dad become as knowledgeable as possible about his cancer, help him become his own advocate and don't rely solely on doctors, nurses, test results, what you read on the web or from people on forums. His decisions will mostly likely determine his quality of life during his journey, not the treatment chosen or outcome of treatment.

    Very best wishes on finding and executing the right treatments for your dad.

    Loved your advice, Rick
    Especially "his decisions will most likely determine his quality of life during his journey, not the treatment chosen or outcome of treatment."

    Great advice for everyone!

    Priscilla in San Antonio

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