Hello BCNA community! This is my first post. I'm a scientist working on breast cancer and I was looking through some of the threads here and it strikes me that the issues we scientists think are the important ones to study may not be the only ones where research is urgently needed. So my questions to you are: What outcomes should we be working towards that you think are most important? Are there issues to do with breast cancer diagnosis/treatment/survivorship/anything else that you feel are being overlooked in research? Looking forward to hearing any thoughts on this! xx

Hi @wingmanLots of good suggestions. What plagues everyone of course is what caused my cancer and could I have done something to avoid it? For those with a high family incidence, there is a clearer if unhelpful answer, but many people castigate themselves for doing (or not doing) all sorts of things that may have made little difference. If cancer is caused by a cluster of triggers coming together, we may still not be able to answer this for some time yet. But the 'possible trigger' vs 'bad luck' debate may limit the adoption of better preventative actions when the benefits are still uncertain.

I too was pleased she took the time to ask.I have met Wendy a couple of times now and I firmly believe she will not only read but act on the guidance we have given her. What is heartening to me is that she is part of a proactive group of young female scientists across Australia driving breast cancer research forward with a new approach that is looking at us as people not just patients - change is coming and I will do what I can to help it.

At the risk of meandering a little, I would like to acknowledge what @"Patti J" has said. I can only speak as someone who was diagnosed and treated for Stage 2 - surgery, chemo and rads and currently, at 12 months post-diagnosis, NED. I cannot speak to the experience of someone who has not had that treatment and has been diagnosed with a cancer that can only be managed rather than treated. (I don't know if that is Patti J's experience or not.) I realise there is a vast difference there and that it is not talked about much. So, one size does definitely not fit all.Many of us, no matter our staging, given the rate of bc in our communities, have watched a close family member (genetic issue or not) or friend go through this and not survive. Some of us carry the spectre of that person, still grieve for that person, and find it difficult to believe that this is not also our fate - they are with with us through this.

@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.

Hi wingman,great to have you here.I’ve had bc twice since 2003 so lots of time to ask questions and meet lots of wonderful women on the bc journey.* I can’t understand why stats aren’t kept on metastatic bc* I suspect the stats/%on bc recurring in the same Breast after a lumpectomy is a lot higher than I was told back in 2003*Could there be a genetic propensity to develop bc if there is strong family history of any cancer?* Could constant stress be a contributing factor to bc developing?Tonya

What research should we be doing?

iserbrown
Member
7 years ago
This is @wingman only post looking for ideas on research.
My guess between us we've offered a lot of thought and it needs to be workshopped into possibilities
Here's hoping we've created opportunity for future research
arpie
Member
7 years ago
As with most health professionals - probably was on hols til mid Jan ...... hopefully we'll hear from her soon, @"Janet A"
Janet_A
Member
7 years ago
I am wondering what has happened to @wingman. Very interested in her studies and research.....anyone know?
Brenda5
Member
7 years ago
CBD oil before, during and after breast cancer. Get it on the PBS!
Beryl_C_
Member
7 years ago
There is an area of research called psycho oncology to investigate the impacts of cancer beyond the physical. One article I read suggested that the very fact of being diagnosed was sufficient to increase anxiety and stress and impact on short term memory. These articles are medical research and present a difficult read. I've had a look at a few but honestly I find the sharing of our lived experiences gives me all the information I need.
arpie
Member
7 years ago
https://www.niim.com.au/research/circulating-tumour-cells-ctc-trial

This one sounds interesting for all cancers ..... but a nursing friend is concerned that the trial is not being done thru a recognised research hospital ..... it would be interesting to hear your thoughts on it @wingman
Janet_A
Member
7 years ago
Hello @wingman

I copied your questions because I would have forgotten them if I hadn't!!
What outcomes should we be working towards that you think are most important?
I think the biggest issue is we are needing to find a new normal I hear this so often and I see girls struggling to find that new normal. We sit in on plenty of clinical appointments that don't address this?

Are there issues to do with breast cancer diagnosis/treatment/survivorship/anything else that you feel are being overlooked in research? To answer this question, I guess we don't realize how life is going to be after treatment. I have found physiologically I am not the same, whilst I am grateful for all the hard work researchers have put into treatment and enhanced better outcomes I wonder if there are studies into the long term effects of treatment?
I have been assisting someone going through treatment now, she isn't coping well at all with the effects of treatment, in fact I think she's about to have a breakdown. I don't think we are made aware of what might happen to us whilst doing treatment?

I have started a group called Breast Cancer, Childlessness and Us. I have read we as childless women are at a greater risk of being diagnosed because we haven't gone through the process of childbirth. What research do you know of that I can follow to be better informed? I have also found this subject lands on deaf ears a lot of the time and as a 'group' in society we are largely ignored and culturally misunderstood.

I am wondering what research has been done in this area of survivorship in the lack of family support we have in our circumstance and the lack of support groups who cater for this demographic?
I also notice living in a fairly remote area south of Mackay and when I traveled 1000 kms for radiation treatment there were other women from Charleville and other areas, the impact of treatment must be different for us? A lot of support groups are driven for city dwellers I am curious if any research has been done in this area also?
I have a shift working husband which is the norm for this area so I spent many hours alone through treatment, going neutrapenic home alone and making sure the property was left in a good state with the animals and travel to Mackay for the hospital. I'm not sure of the impact this has had on me mentally and how we cope after treatment after our own journeys which are so vastly different?

Are you thinking i had to ask! I'd like to know what you think.

Cheers Janet
arpie
Member
7 years ago
Many thanks for that pic, @JJ70 - I'd not seen that one before!
Afraser
Member
7 years ago
3D mammography is a big step forward, my surgeon is a very satisfied man since getting his new equipment!
JJ70
Member
7 years ago
@Sister - yes ultrasound and/or breast MRI is usually better for dense breasts. 3D Tomosynthesis mammography does give better images than standard 2D. If you can imagine the image being cut into thin slices, those slices analysed and then put together as a whole image. It is more costly, not only the hardware, but the reading of the images takes a lot longer too. @wingman - please correct me if I am wrong, I am always learnng :)