What research should we be doing?

wingmanwingman Member Posts: 2
edited December 1 in General discussion
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

  • kezmusckezmusc Member Posts: 789
    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.
  • RomlaRomla AdelaideMember Posts: 1,616
    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.
  • Blossom1961Blossom1961 Geelong, VicMember Posts: 257
    edited November 30
    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. 
  • kmakmkmakm MelbourneMember Posts: 5,404
    Thanks for that @Romla.
  • MeganMMeganM Member Posts: 24
    Thanks you for asking. My request is simple- stage 4 cure please 
  • arpiearpie Mid North Coast, NSWMember Posts: 1,507
    edited November 30
    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.
  • primekprimek Broken HillMember Posts: 4,613
    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. 
  • RomlaRomla AdelaideMember Posts: 1,616
    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.


  • Rose18Rose18 Member Posts: 82
    edited November 30
    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. 
  • SisterSister Adelaide Hills, SAMember Posts: 3,042
    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.  
    Much of this is a rehash of what others have said.  There was something else I had thought of while I was typing but it's gone (the cognitive impairment is very real).
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