What research should we be doing?

Hi @wingman. Thanks for joining us and asking our thoughts.

I am running a campaign at the moment for greater awareness of FREE mammography from 40 and also to reduce the active recruitment age from 50 to 45. It is called Can at 40. Do at 45.  Here is the link to the campaign page: https://www.facebook.com/Can40Do45/
I would love you to have a look at the campaign and offer suggestions. If you are in agreement with our mission statements, I would love you to advocate for the campaign.

MISSION STATEMENTS:

To increase awareness of FREE screening mammograms for women 40-49 provided by BreastScreen Australia.

To lower the Australian active recruitment age for screening mammography to 45.

One of the negating factors for mammography from 40 is breast density - your field. I am familiar with 'Informd' and have used some of this information in my campaign.

I really want  Australian breast density rates for women 45-49. Everything I look at is 40-49 - of course the lower 40's will skew negatively away from probable lower breast density rates in 45-49 year olds. I believe breast density sits at about 40-50% for women over 50 and 50-60% for women under 50 - is that right Wendy?

Could you direct me to any breast density rates specific to 45-49 year olds? 

With at 20% of BC's diagnosed in women 40-49, I believe there is a big hole in the screening system, with the vast majority of women in this age group unaware of their eligibility. GP's range from proactive encouragement to active discouragement re:screeening under 50, so the confusion out there is completely rife.

I've just read AIHW report on Screening mammography behaviours and stats released on Monday. The 40-49 year old data from this report just makes me even more passionate to continue on with this campaign.

Wendy, is there any further progress in the rest of the state and territory BreastScreens notifying women if their density has compromised the reading of their images (like WA)? What is the hold up? With a higher BC rate linked to higher breast density, it seems negligent not to inform women if they have dense breasts and for women to incorrectly believe that their mammogram has been useful.

Let me know if you would like more information or any campaign cards!!

Thank you for reading and considering my questions.

Warm Regards,
Jo Joyce
Founder: Can at 40. Do at 45.

I’d like to see research into the contribution to the lives of breast cancer patients/survivors of this blog especially to those who joined the blog early in diagnosis.

More research into life post treatment. It seems so many struggle with physical , emotional and financial consequences after active treatment ceases and yet there seems to be a community perception that once treatment ends one just resumes their former life.

Oh...then there's the  stats .

Women with hyperthyroidism have an increased risk....how much...what studies...no one  is  told about that either. 

I had dense breasts and Grave disease. Does that  increase my risk by what? It wasn't even mentioned to me. Found  out by accident.

So glad I've had them lopped off...but perhaps less heartache could have happened. 

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. 

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.

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

Thanks for that @Romla.

Just a little bit about Wendy Ingman 

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

@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.

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.