Forum Discussion
Predict - Breast Cancer app
I’ve just discovered an app called ‘Predict - Breast Cancer’. I may be late to the party on this one and you might all know about it but I’d like to know your opinions if you’ve used it and if you’ve...
SYLV1E As with Moomincorn Back when I was diagnosed, it was wasn't available to the public - only to the Oncs (hiding the screen - so I took notes AND recorded it!) They used this tool to give you an idea of how effective your treatment plan should be, showing 'survivability' percentages from said plan - usually using the 10 year anniversary as being 'good'! From memory, mine indicated that up to 90% re my diagnosis, tumour size & treatments should survive longer than 10 years. (I am in my 9th year now.)
It was suggested to me that my results were inconclusive if radiation would increase my 'survivability' .... so it was my option to have it or not. I said "YES, I will have it" as I didn't want the 'what ifs' if it came back earlier than the 10 years. ILC in particular is a much slower growing BC than the others .... and sadly, can pop back up again even 15-20 years later (as happened to a girlfriend.)
As you say - it should really only be used in consultation with your Onc - as, if the incorrect info is put in (accidentally) the results might scare the pants off you!
I know I always say that 'Knowledge is Power' ..... but conversely, 'Too Little Knowledge can be Dangerous!' .... so put your trust in your team xx
Take care & all the best xx
Thanksarpie, for replying. I don’t have a problem trusting my team but after way too many misdiagnosis’s over the years, I won’t trust them blindly. I ask all the questions and want to see all the reports and that doesn’t always go down so well with some doctors. 😄
My best example of this was about 5 years ago when my asthma was making it hard to breathe and I was also having trouble swallowing as food seemed to be getting stuck. My GP sent me for scans and when I went back for the results and asked for a copy of the report.
The conclusion at the bottom said everything was fine but as I’m reading the report, I noticed somewhere halfway down the page the comment ‘right-sided aortic arch noted.’ I asked my GP what that might mean and she didn’t know. I had a phone appointment with my cardiologist the next day so I asked him and he said he’d never heard of it. He checked his book (wta) and advised that it wasn’t in his book so mustn’t be too serious.
So, when I get home im straight on the internet, found right sided aortic arch and all variations of it with photos of scans and all. So I jumped onto my Hunter Imaging portal and sure enough, my scans looked similar.
I sent an email to my cardiologist and asked if this is what I had and attached the online info and scans and my scans. No reply, but ended up at Emergency the next weekend because I was struggling to breath and handed over all my research and again to be dismissed as it was ‘very rare’ so not likely to be the problem and got sent for a scan for pulmonary embolism which was all clear. After threatening to call the REACH number, one of the younger doctors had a proper look at my scans and pointed to the one with my name on it and asked “is that you?” 🤦🏻♀️
She took off to find someone from the Cardiothoracic Team and next thing I know, I had an appointment at Westmead Hospital with one of the top Cardiothoracic Surgeons two days later. Turns out I have a congenital defect where my ascending aorta crosses over to the right side of my chest instead of staying on the left and my descending aorta comes down midline, so in front of my spine but behind my oesophagus and trachea.
So, that’s just one, very protracted, example of why I like to do my own research, and that’s the short version. 😄
And I apologise if you’ve waded all the way through that. 😂😂Holy Moly, SYLV1E ... well done YOU for advocating SO strongly for yourself xx. And thank god you did! Yep, I always ask for printed copies of my report .... and it is good we can now see our own scans, once they did away with the old 'plastic/seethru' Xrays.
Yep - and specially being 'rural/regional' (and being female!) we are not always given the thorough 'check' that a guy would be given, if it was HIS report.Keep doing your researching!
