Treatment calculators
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The user and all related content has been deleted.1
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Yes my oncologist used the NHS one and another and discussed it with me at length.0
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Aggie thanks for the link.
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Aggie and kmakm. Thanks for posting, especially for the tufts calculator. I checked it our and I am now more certain that I am going to have the radiotherapy. I don't understand why they try to keep these things "secret" from us. We are not children.
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Be aware that these type of calculators tend to rely heavily on stats related to ductal carcinoma. They may not be reliable for other BC.0
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The user and all related content has been deleted.3
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One of the problems with some of these tools is the methodology. Predict is based on a longitudinal study in the UK. The sample size is, well, not that convincing and from a scientific perspective the lack of double blind trials due to ethics makes some of the data not as reliable as you may find in other fields. This is not ideal. I've discussed this with several oncologists who have all seemed a little uncomfortable with those questions. The generic response is 'It's the best information we have" which appears to be true.
Some of the percentages are depressingly small, particularly when assessing the usefulness of chemo. Recent developments that give a better idea about that, such as oncotyping, don't feature in most tools at all. I imagine it will take some time for those things to make their way into the calculators as they are not commonly used as a diagnostic due to the cost.
There also seems to be very little data about mortality or severe debilitation that can be attributed directly to treatment and that information is separate from the tools. I find that frustrating. It's possible, of course, that lay people have different access to the professionals.
The bottom line is that the treatment we are offered in Australia appears to be responsible for our outstanding survival rates. We all need to use what ever resources are available when making decisions about what we can or are willing to do--personal beliefs and our previous exposure to cancer obviously influence those choices. It really is a shit of a disease.
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Anyone know why is radiation not included on these things?0
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I'm going to have to check out all these sites now0
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Honestly, that's really depressing sitting there studying what your chances of living for the next 10 yrs worked out by a computer are.1
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@kezmusc - I just had a look at one for shi*s and giggles and it pretty much the same as what my onc told me when she was giving me the chemo option.0
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I don't want to know what my chances of recurrence or survival are and for how long, especially not on a computer screen home alone.
I haven't even been tempted to look in case I read something disagreeable.
I certainly haven't asked my oncologist who always goes straight to his laptop for answers - and he hasn't told me.
I take my medicine every day and try to imagine a life with even half of my energy back again.2 -
Having won the one in eight chance of just getting breast cancer and the 0.26% chance of getting Tinnitus while on Tamoxifen, I don't entertain stat rates at all now.2
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@Brenda5 I had Tinnitus before cancer and it seems to have lessened since that first round of chemo... so many other things now swirling round my head.
Tinnitus only affected me when I thought about it, which was often. Now it's gone to the back of my head and I've practically forgotten that I had it until I saw your post.
The mind is indeed a strange place.0
