just went on the cancermath site where prognosis was exactly that given by my oncologist
Horace,
how did you know what to put in the 10 year risk bit?
Sheana x
Sheana,
It seems to adjust itself as you complete the other drop down boxes. I have no idea what it means but liked the results it came up with! So I left it alone.
I have just joined and it wasnt easy to follow but think i did it right.
It said the 10 year mortality 17, can someone explain what 17 means?
Hi,
My 10 year risk has 58 in it…what does that mean? Sorry to be a pain but would a clever person write down what you do step by step please?
Sheana x
PS…think I may have worked it out…45% chance of dying in 10 years…eek! But as I had the combined therapy 27.3% more, I assume, will still be alive…hope I’m one…goes up to nearly 70% yea!!
Out of interest would any of you ladies like a proper interface to the adjuvant online system.
I know some of the people involved in it and have already had some discussions about how much information we should be allowed access to outside of meeting with our oncologist and it may be possible to make a much more user friendly interface in the future so people can ask it questions and discuss with their onc etc later but I wouldn’t want people to get really upset if they hit the wrong button (or right one but aren’t in the right frame of mind for the answer).
I’ve personally felt that I need about 10 hours with my onc to get the answers I need or access to the system myself. My Onc naturally is very busy like all of them and I am just having adjuvant treatment at this time so wouldn’t dream of taking time from people who are dealing with recurrences etc. That doesn’t mean I don’t want to know everything though, but this is a serious suggestion. My friend (who’s a work collegue) has said he can put me in touch with the right people but there will be hurdles I need to clear such as data protection issues and I wouldn’t personally feel emotionally strong enough to take this task on until I’ve finished my treatment later this year.
Should I start a separate thread on this? Is there any real interest?
Angie
The thing I saw was a graph which gave 20 year survival stats for women my age with and without breast cancer like mine.It asked for type of tumour;size,grade,hormone status,herceptin status and evidence of recurrence if any.It also asked for years since dx then came up with the graph and some written info.That doesnt sound like what you are asking about!i just followed the link on here.
Angie
I have not yet gone over to cancermath or adjuvant sites, but would appreciate being able to do that
so I vote yes
thanks!
Hi Horace,
That sounds different to what I saw…I’ll have another play and see what happens,
Sheana x
Another yes please Angie
And me
Liz xx
yes I would be interested
woo hoo i got 88.4% chance of surviving 10 years more than I thought I would if I hadnt had this lol
I found it interesting to read about the weighting for those under 35, I said I was 36 and that changed it by an awful lot. That seems very blunt to me.
I read the reasoning and explanatory notes but it’s still blunt. I will talk to my friend and let him know that I’m interested in a meet when my treatments over, ie next year. I think I’m too close to it to do a good job right now but I’ll start the ball rolling and post a thread about it when I’ve got some agreement from the people that I’ll need to persuade. I may need some people to sign a petition or something to convince them that there is desire for access and explanation of the tool and that we have the right.
Reading between the lines I get the impression that some health care professionals think it’s OK to decided how much info we can handle on our behalf. I sincerely hope I’m very wrong about that.
I am in many ways an information seeker but actually the information I have wanted has always been of a broad brush variety rather than a focus on minutiae. I wish someone could tell me now if I am going to live 6 months or 6 years but they simply can’t.
The adjuvant on-line facility is a bit of a joke…it shouldn’t be that easy for us to pretend to be medics! I’m all for user freindly prognostic sites for anyone who wants them but I think the ways in which we handle the information the sites throw up is the real key issue.
Jane