Forum Discussion
Treatment calculators
Dear all, methinks we all need a bit of empowerment. Here are two sites freely available on the net, you can type your BC details in, age etc, then the system will calculate survival etc in various time frames, with or without chemo. These are not gimmicks. They are used by oncologists, for example my (Associate professor) oncologist used the following and printed out from it on his Iphone so you can do the same!
Another professionally used tool is
Have a look in your own good time and think about what it all means for you and only you!
Cheers, here is to life!
14 Replies
- @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. - 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.
- 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. - @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.
- Honestly, that's really depressing sitting there studying what your chances of living for the next 10 yrs worked out by a computer are.
- I'm going to have to check out all these sites now
- Anyone know why is radiation not included on these things?
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.
- 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.
