What research should we be doing?

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.

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

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.