i read recently (Breast Cancer Trials website) that neither Australia nor New Zealand keep statistics on breast cancer recurrence. Just wondered why. It may be that there are too many variables to be useful, but it seems strange given the degree of research being undertaken generally.

As I said, clearly there are a lot of variables - for example falling foul of stats involving patients giving up on hormonal therapy and how many years they actually took it, it’s easy to get pretty complicated. I was giving some feedback to a research graduate in Sydney on post breast cancer late side effects and asked why the questionnaire obviously only targeted women. Answer was while they knew men get breast cancer, it was easier to contact and get results from women only. I registered my concern!

What the! So why are they putting us through all of the pitfalls and side effects of preventative "therapies" if they don't even know what's working, useless or damaging? No wonder the medical oncologist is so vague. When Tamoxifen caused endometrial thickening and I had to change to Zoladex and Letrozole, my oncologist said, "There's no science to this, it's just guesswork". Another helpful comment from a medical oncology intern: "We treat a hundred to save one".BCNA, please do something about this issue.

If doctors don’t record a recurrence and stats collected then how can treatments be evidence based?During my 17yrs of a bc journey I’ve met so many women(including myself)who’ve had a recurrence after a lumpectomy and radiation.It’s surely more than the 8% chance I was quoted but who would know?

The stats they quote are based on clinical studies. Many studies have been done on chemo, herceptin and aramatose inhibitors and clinical trials and follow up over years is what determines it. The trouble with collecting all data is the sheer volume of people, compliance, if treatment was finished etc etc which is a lot of info to take on everyone I guess. Studies are snap shops...so for every 1000 women...this happens for instance. And then repeated with other studies. After collecting multiple studies and analysing (meta-ananlysis) is what leads to those recurrence tools like predict in UK. Studies are occurring all the time and across the world.

That does seem strange @Afraser. Even if there are variables, who knows what data may be useful at a later date.

Recurrence | Online Network

Sister
Member
5 years ago
That does seem strange @Afraser. Even if there are variables, who knows what data may be useful at a later date.
Abbydog
Member
5 years ago
That certainly is disappointing.
Deanne
Member
5 years ago
It does seem like a missed opportunity for valuable information. It is certainly something that might help to further inform the decisions we have to make. If other countries (the UK records this) can do it then it must be possible and of value.

Research about treatments and their effectiveness in preventing recurrence are based on limited numbers of people sampled in individual studies. Surely keeping track of what happens to general populations would give so much more information. I guess it comes down to money to fund the recording of such a large amount of information.
arpie
Member
5 years ago
How incredible is that? If they aren't recording the numbers of recurrences & how long after diagnosing & staging etc, they have no idea how to predict the chances of recurrence! :(
Afraser
Member
5 years ago
As I said, clearly there are a lot of variables - for example falling foul of stats involving patients giving up on hormonal therapy and how many years they actually took it, it’s easy to get pretty complicated. I was giving some feedback to a research graduate in Sydney on post breast cancer late side effects and asked why the questionnaire obviously only targeted women. Answer was while they knew men get breast cancer, it was easier to contact and get results from women only. I registered my concern!
TonyaM
Member
5 years ago
If doctors don’t record a recurrence and stats collected then how can treatments be evidence based?During my 17yrs of a bc journey I’ve met so many women(including myself)who’ve had a recurrence after a lumpectomy and radiation.It’s surely more than the 8% chance I was quoted but who would know?
Dory65
Member
5 years ago
What the! So why are they putting us through all of the pitfalls and side effects of preventative "therapies" if they don't even know what's working, useless or damaging? No wonder the medical oncologist is so vague. When Tamoxifen caused endometrial thickening and I had to change to Zoladex and Letrozole, my oncologist said, "There's no science to this, it's just guesswork". Another helpful comment from a medical oncology intern: "We treat a hundred to save one".

BCNA, please do something about this issue.
Jwrenn
Member
5 years ago
I’ve always thought with hearing other people having chemo for other types of cancers that it was an experiment. One didn’t work so we’ll try another. There is nothing guaranteed in this life.
primek
Member
5 years ago
The stats they quote are based on clinical studies. Many studies have been done on chemo, herceptin and aramatose inhibitors and clinical trials and follow up over years is what determines it. The trouble with collecting all data is the sheer volume of people, compliance, if treatment was finished etc etc which is a lot of info to take on everyone I guess. Studies are snap shops...so for every 1000 women...this happens for instance. And then repeated with other studies. After collecting multiple studies and analysing (meta-ananlysis) is what leads to those recurrence tools like predict in UK. Studies are occurring all the time and across the world.
Afraser
Member
5 years ago
Thanks @primek, that’s what I thought. I recall a research project which didn’t factor in hormonal therapy treatment (how many took it, for how long) which pretty well killed off the usefulness of the data that was gathered! The studies do provide useful information, if not absolutely decisive. Educated guesswork is much better than pure guesswork!