What research should we be doing?

Hey @wingman,

Thank you, thank you for joining.  I am sure you are going to be very popular! 

I have two suggestions off the bat.  The cognitive disfunction associated with hormone therapy.  This thing goes on seemingly forever after you have finished your "active treatment"  and has a massive impact on the quality of life for those that suffer with this side effect.  There are a lot of posts on here about this subject.

2.  I personally would like to know more about whether or not phytoestrogens alter the effectiveness of hormone therapy.  Those of us on these drugs are advised not to take anything like promensil, remifen etc to help with the hot flushes and the effects of being thrown unwillingly and somewhat early into menopause in case they render the HT drugs ineffective.

Hello Wingman. Well done on finding your way to this underestimated superb hive mind!

Here's my two cents worth: I'm not Stage 4 but constantly hear that Stage 4, metastatic cancer, does not get enough of the research pie. I know a cure is the holy grail, but some people seem to live longer with mets than others. Why do some people's breast cancer recur as metastatic and other's don't? Can we get to a point where we can die 'with' this disease rather than 'from' it, like HIV? 

From a personal point of view, I'd like some research done into how to lessen the side effects of aromatase inhibitors (or develop new and better ones!), and how to lessen and mitigate the effects of Cancer Related Cognitive Impairment. From my own experience and from reading about other's here, too often our concerns are dismissed, or met with little more than Pity Face and a shrug. Survivorship is hard enough without managing difficult ongoing side effects for possibly up to a decade or beyond.

Please please please find some way to help the nuclear grade hot flushes that you get from cancer treatment putting you into menopause. You can't take hormones to help when your cancer feeds on them...

Thank you so much for asking! If I think of any more I'll get back to you! Kate

Welcome to the community Wendy !  It is wonderful that you have taken the time to come and listen to us. Feel free to join in the conversations as I think we will all be chuffed that you are interested and willing to listen.

I don't want much. Just a quick cure will do. One itsy bitsy pill and then we are fixed! Then we don't have to worry about the short or long term side effects. Simple. 

 Seriously, the most frustrating things are the side effects of the drugs which vary hugely. I would agree to all the above comments without hesitation. We want to feel like we have some sort of control but the drugs take that off us. Emotional well being is a biggy. Menopausal symptoms is another biggy. 

@BCNA could we put Wendy Ingman’s post towards the top of the page for a week or so  to give people a chance to see it and comment.It is a very special opportunity to be able build a bridge between the scientific/ medical community and the breast cancer community.

Just a little bit about Wendy Ingman 

https://www.abcr.com.au/inspiring-woman-interview-associate-prof-wendy-ingman/

Thanks for that @Romla.

Thanks you for asking. My request is simple- stage 4 cure please 

It is TERRIFIC having you here, Wendy @wingman - thank you so much for coming on board and listening to our concerns .... hopefully, you will be able to discuss them with your colleagues and form a battle plan ....

We've all had the surgery, some have had chemo, many have had rads and many more are on Hormone Tablets for 5-10 years.

But the biggest thing most of us hadn't factored in - is the Mental and Emotional turmoil that 'takes over' from the physical illness.  We are all told about the various stages of our treatment, but this part of it is rarely, if ever, mentioned, yet it impacts us so badly - and for how long?  We don't know.

This then morphs with 'going back to work' whilst still on hormone treatment whilst still 'in recovery' from surgery, chemo & rads.  I am lucky - I was not required to do chemo and am retired - but I see those who really struggle to maintain a household and work whilst going thru all this.  

I am not sure how this could be approached for research?  Any ideas?

Are you aware of Liz Oriodan's Cancer Blog?  As a UK Breast Surgeon, she developed breast cancer & has had a recurrence as well. She was a very fit triathlete prior to diagnosis.  It is an excellent dialogue from a medical professional - she was also caught unawares in so many ways - and she thought she 'knew it all'.

This is a 'must read' for EVERYONE - you will not feel so 'alone' in what you are going thru.
http://liz.oriordan.co.uk/CancerBlog/

12 months ago, I was a happy, healthy, retired person with plans for a happy life - I am not that person now.

I don't think Liz is either!

Oh ... and EVERY woman with dense breasts needs to be advised of this at their first BreastScreen, so that they realise Mammograms (even 3D) and Ultrasounds may not pick up their Tumours.  My regular Breastscreen Mammogram 6 months earlier did not show it.  Both MG & US after detection were inconclusive with my tumours, even tho given the exact location by my GP - only the biopsy confirmed it.  ILC  It was my GP who found my lumps.

Research on use of low dose estrogen pessuries with women who have a Es+ breast cancer.
Currently Dr's are not sure its safe to prescribe and some women are in agony after menopause with vaginal dryness ...then throw in an aramatose inhibitor and ones sex life is over. (Lets not forget also pre menopausal women who are forced into menopause by medication )

So research on what's currently available but also a safe suitable effective alternative would drasticly improve the life of women living with the side effects of breast cancer treatment.