What research should we be doing?
wingman
Member Posts: 3 ✭
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
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Comments
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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.4 -
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! Kate6 -
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.
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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.1 -
Just a little bit about Wendy Ingman
https://www.abcr.com.au/inspiring-woman-interview-associate-prof-wendy-ingman/
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Thanks you for asking. My request is simple- stage 4 cure please3
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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.2 -
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.7 -
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.3 -
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.
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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
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.
active recruitment age for screening mammography to 45.
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.
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Hi @wingman, it’s great to see some of the developments in cancer research and their impact on people with cancer and survival rates. Thank you to you and all researchers for your continued hard work.
I’ve been thinking about your question. I’d love to see some more research into the psychosocial aspects of chemotherapy and cancer treatment more broadly. Chemo was a very lonely experience for me. I wore cold caps and I couldn’t hear very well, or listen to music. I felt a million miles from everyone. Just writing this 4 years later makes me cry. I wanted to write a letter at the time to let the nurses know how I felt, but I felt a bit powerless and didn’t want to be seen as the difficult patient.
Perhaps a closer look into the benefits of music and massage during chemo might be good, along with encouraging small groups to get to know each other a bit. Another idea I have is to look further into the role that online technology can play in promoting mental health and wellbeing during treatment. Keep up the good work. Research is helping people to survive cancer in greater numbers and has the possibility of promoting a better quality of life for people undergoing cancer treatment and for survivors.
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Welcome @wingman (although it's a different welcome than the one I usually give). Everyone has gotten here before me with things that are important and my concerns are very similar:
- impact on mental and physical health from joining a support group such as this
- isolation (physical or mental) after diagnosis
- economic/social benefits of exercise/recovery programmes during treatment - should they be funded
- emotional/economic issues of cognitive impairment as a result of diagnosis/chemo - impact on getting back to work
- ongoing issues with physical recovery after treatment (general weakness, tiredness, cording, pn) and programmes to improve health - social/emotional/economic benefit of long-term programmes for physio, exercise and relaxation - should these be funded/heavily subsidised?
- better understanding of impact of hormone therapy - aches, vaginal dryness, etc - and treatments
- causes of recurrence
- better detection methods for both survivors and general public
- teaching our daughters (and sons) about surveillance
- acceptance of yourself as a survivor - too many studies seem to see it as just a sexual body image (having breasts) rather than the difficulty of accepting the whole package. Not having breast/s is just the obvious physical manifestation.
- some people have had wonderful bc nurses who have helped co-ordinate services and provide a lot of information when needed. This is not the case for most of us.
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