Recurrence Predictor Test

I have lived a somewhat careful life and here I am on this website.
As far as I am concerned 'they' can do whatever research they want and come up with answers for the distant future for someone we will never know but for me, I am now living how I want, having what I want and doing what I want BECAUSE I may die tomorrow in a car accident or I may die in the future from a recurrence of the BC.  Who knows ? 
Do what you think is best for now and just hope the future supports your decision.
If not, what will be will be and those left behind WILL cope.
Anne

Thanks for that link @kezmusc  - there was a separate link at the bottom that was interesting well ..... suggesting that those on  Tamoxifen & AIs SHOULD actually be getting a dose of progesterone as well as it works better for preventing recurrence!   

@kezmusc There was quite a bit about the protective role of progesterone in breast cancer in the Garvan presentation. It is being looked at quite carefully.

I took quite a lot of notes but it's dense scientific stuff and I haven't had the time or energy to summarise it yet.

However I do recall the professor saying that making progesterone is difficult and expensive and the French are the only ones who do it. Progestins were used in HRT. Previously thought to be the same, they're not, but progesterone got swept away in the controversy. The scientific community has circled back and are looking closely at it.

They think that possibly one of the reasons that BC rates rise after menopause is because progesterone declines.

This is one of the slides they showed us:



So there are trials going on at the moment about adding it back in. This is the Garvan one:

Maybe you can, I was told I couldn't because....I dunno...the computer said no? It's probably a specialist field and you need to speak to the right ist and it's not surprising that the folk her in Bumfuk West have no idea how that system works.

I do know that my first set of implants have been preserved for the edumication of future plastic surgeons. My body hated them and I was turning those suckers into pearls--completely encapsulated. I asked to see them a couple of months later but everyone I spoke to at Peter Mac went all squirmy, yes they probably still held the samples but no, they weren't going to provide them as I'd signed off my ownership (that's a 'thing' with donated samples) and it was All Too Hard.
I wonder where the spare bits warehouse is too. I'm assuming most of the 'waste' gets incinerated, but I would like to have followed the journey of my amputated bosoms--chest, dish, trolley, hallway...then where?

Hehehehhe. @Zoffiel

 I am sure I would have signed the research form and I don't really care what they did with it.  Why can't you request your own bits????
I was just curious as to where the spare tit bits warehouse was.

@kezmusc one of the eleventy thousand forms you probably signed pre-surgery (or at some other stage during the shitfight) would have been a permission to retain a sample of your tumour/s that can be used for scientific and research purposes. I asked the same question not long ago--what happened to those bits of the tits? The answer was 'It depends.'
Tissue banks are supposed to be de-identified. All the relevant information is kept, apart from your name. That, in theory, should mean I can't request a sample I donated 13 years ago be retested to give me more information that might inform future treatment decisions. This, from what I was told, only seems to apply to donated tissue samples (wee scrapes on a slide, usually, not a wrinkled lemon floating in formaldehyde) but it appears some services do keep  larger identified samples, but I've never figured out who/how/where. Being a commoner with no health insurance and a not-so-terribly-remarkable cancer, I'm assuming mine went into the communal mince. Mxx

@kezmusc thanks for the link to that article, also helpful for me with >96% cells ER/PR+ 

When I asked about the slides of my tumour, the Registrar said the slides are kept in the pathology lab... I didn’t sign anything for research purposes but I imagine being a tertiary hospital it is used for that at some point in time? 

Hi @Jane221,

I did read the PR article quite a while ago actually this one was published in 2015 I think.  You may have already read it but here is the link.

https://scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-positive-women-do-better/

How much faith to put in these tools at the moment, that's anyones guess but it's all we have.

Hopefully down the track though there will be more acurate information.  The above article was encouraging for me being 95% both ER/PR, but did little to relieve the fear of recurrence at the beginning. Especially the bit about the cancer cells trying to get rid of their PR receptors. Sneaky little f***ers.   Only the future will tell I guess. 

Is there a more current article on this???

The thing with these predictive tools is they give an average. For example I was told that HT (any of the HT drugs) will give  an extra 6% coverage. No average mentioned, just a figure.   When you look further it can be anywhere between 2.5% to 11%.  For 2.5% I would ditch it. For 6 to 11 well that's better odds to continue. 

Whichever way it goes, I highly doubt anyone is going to get the "We got it, it's never coming back, get outta here and live your life worry free"  So it's probably not going to relieve the fear only water it down for some.

Continual constant confusion.  Plus a dose of analysis paralysis.  :) 

 You are correct @Afraser be careful what you wish for. Being in the high risk group there is no way I would want that confirmed in figures, but, if it was available on line like "predict" for anyone to access who wouldn't look? 

xoxoxo


P.s
Do they keep everybody's tumours in a pickle jar on a shelf somewhere so the can retest them later???

One thing we need to keep in mind is that they already try to predict survival rates based on tumour type, size, aggressiveness etc and this is the current information our specialists are aware of when they advise treatment options. This tool would simply provide the clinicians and specialists with (hopefully) better information so that the best treatment options can be offered for each individual.

The tool is an interesting part of a much bigger picture which is all about understanding more about how the various subtypes work - eg the latest thinking is that higher levels of progesterone might be protective, thus the reason why it appears those with strong double positive hormonal bc do better. 

How this information is handled with a patient obviously requires a lot of thought and careful management.

@youngdogmum At the Garvan Institute presentation last week, the introduction of the info that there were 11, possibly 12, sub-types of BC came quite late in the afternoon. I would have loved some more information! Perhaps have a look at their website? Maybe there's someone there you could email.