Seeking your topic suggestions for our upcoming conferences

Laura_BCNA
Laura_BCNA Member Posts: 168 ✭
edited November 2019 in Community news and events
Hi everyone
We are starting to plan our conferences for next year, at this stage they will be in Darwin and Perth. As we are in the program development stage, we are seeking your suggestions and local knowledge! Please let me know of any topic ideas, general feedback or local knowledge you have that may assist with our program development.
Thanks, Laura
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Comments

  • kmakm
    kmakm Member Posts: 7,974 ✭
    @JJ70
  • JJ70
    JJ70 Member Posts: 983 ✭
    Involve Breast Cancer Care WA for your Perth conference. They are an amazing resource for post diagnosis. I'm sure they are probably on Kristen's radar.
  • JJ70
    JJ70 Member Posts: 983 ✭
    edited November 2019
    I live in Perth and am the founder of Can at 40. Do at 45 - a FB campaign to raise awareness that screening mammography is available from 40. @Can40Do45
    BCNA endorses this campaign, so if the campaign  could  be involved, that would be fabulous!
    BCNA have my contact details - I would be happy to assist BCNA in Perth.

    Thanks for tagging me in @kmakm . xx

    Thanks Laura.

    Cheers
    Jo Joyce
  • JJ70
    JJ70 Member Posts: 983 ✭

  • kmakm
    kmakm Member Posts: 7,974 ✭
    No worries @JJ70.  :*
  • Beryl C.
    Beryl C. Member Posts: 270 ✭
    'Yes' to Romla's suggestion - the side effects can have a very disruptive impact on lifestyle, eg, peripheral neuropathy. There needs to be a shift from 'keeping you alive' to 'lifestyle and quality of life is an essential component of treatment'.
    I would also like learn more about legal/science research based trials with cannabis.
  • arpie
    arpie Member Posts: 8,116 ✭
     the importance of advising women of their breast density at the time of their first scan and the importance of ultrasound as well as 2D mammogram for those with dense breast tissue as it will be a long time before 3D machines will be available to all.

    WA Breastscreen DOES advise, but no other states do.  This knowledge can make the difference between an early diagnosis with minimal treatment vs later higher stage diagnosis and more extensive treatment.
  • Afraser
    Afraser Member Posts: 4,440 ✭

    Anxiety

    I know this is tricky but most people are really scared when they are diagnosed. So are most of their friends and family, whatever they may say. And we all know what we are scared of. Discussing it in depth at a conference may not be the best way of helping, but perhaps just touching on it with some references to good books or websites might ‘normalise’ the feelings. It’s addressed more openly, obviously, for those with advanced cancer but that’s even more scary for those diagnosed with early breast cancer. So hard to make good decisions when your anxiety has you frozen or floundering. Women tend to suffer from death anxiety more than men, and the years when many are diagnosed are also peak for anxiety - again for obvious reasons such as children or ageing parents.

    ‘It is during the years of young adulthood (20 to 40 years of age) that death anxiety most often begins to become prevalent. However, during the next phase of life, the middle age adult years (40–64 years of age), death anxiety peaks at its highest levels when in comparison to all other age ranges throughout the lifespan. Surprisingly, levels of death anxiety then slump off in the old age years of adulthood (65 years of age and older). This is in contrast with most people's expectations, especially regarding all of the negative connotations younger adults have about the elderly and the aging process (Kurlychek & Trenner, 1982).’

    Just a thought. 

  • kmakm
    kmakm Member Posts: 7,974 ✭
    @Temple I wholeheartedly endorse your suggestion. I took part in a webinar on the endocrine therapies. I was asked to supply questions to two eminent doctors. All of them were ignored. My personal experience includes one oncologist laughing about the side effects... While my current oncologist takes my concerns more seriously, no genuine answers are provided. The shrug, literal or metaphoric, is real.

    I have not had an easy run with Letrozole side effects, but 16mos in my rage no longer boils (well, occasionally it still does!). Mostly it's burnt itself out and I no longer have the energy to bang my head on the unyielding bluestone wall.

    This is where I've landed:

    1. The drugs are far from perfect, but at this stage they're the best we've got. I'm gritting my teeth and persisting because I wish to do everything in my power to never have this disease return.

    2. I focus my energy on pain management. I've worked through most of the available options, and go with what works for me. This has been trial and error, and the only person who's been remotely interested is my GP. And I'm lucky because she is an excellent one. There needs to be far more support given to women who have trouble with AIs/Tamoxifen. With a drop out rate of 70% at five years, it is utterly mystifying why more isn't done to support women in this phase of treatment.

    3. I am taking part in a drug trial for a medication to reduce hot flushes for women who can't take estrogen. I don't care whether I'm on the placebo or the real one. I want to do anything so women don't have to suffer the way I have, and continue to do so.

    While I strongly believe that the treatment of women's health has been coralled into a sexist cul de sac, I also believe this is slowly changing. I have met some genuinely committed and caring clinicians and researchers. Our job is to continue to be loudly vocal about the problems with this treatment. The squeaky wheel gets the oil. There's never going to be enough money to fix all the health problems, but as the most commonly diagnosed cancer in Australian women, breast cancer deserves attention by the sheer weight of numbers.

    I do understand that the surgeons and oncologists tend to deal mostly with the action of surgeries and active treatments, and to them it must sometimes seem like patients with medication issues are waay down the list of priorities. However I wish the suffering of endocrine therapy patients was taken more seriously. Survivorship is hard enough without the difficult to crippling side effects of an AI/Tamoxifen.

    4. You can take two month drug holidays on an AI (do speak to your oncologist first though). I live for those. If I can have a two month break after each 12 months, and my side effects don't get worse (which they currently are, especially in my left arm), I might just make it to the end of the course of treatment.

    Hang in there @Temple. A couple of the side effects I had in the first six months did settle down. We're all different. I hope things get easier for you. K xox
  • iserbrown
    iserbrown Member Posts: 5,727 ✭
    As noted above we are all different!  
    I am one of the fortunate ones who has an Oncologist who understands, always asks and has changed my medication when the side effects were affecting my everyday living.  At present I am on Aromasin (Exemestane) and coping for 11 months now. I have one nagging side effect, which occurs mainly at night and not every night, otherwise all good!
    This isn't keeping with the original question of the thread however @Temple I wanted to give you hope!

    Take care
  • Temple
    Temple Member Posts: 42 ✭
    Thank you I am so glad hear of least one person who is coping with Arimidex. I got unlucky with cancer and unlucky with a new oncologist and radiation oncologist who are terrible. The oncologist raised her hand to shut me up the first time I tried to ask a question. And said I should just listen. The rad onc is MIA. A receptionist rang to tell me what my radiation treatment would be really just for scheduling and for a credit card no. I have never been able to ask a question.

  • Zoffiel
    Zoffiel Member Posts: 3,374 ✭
    I would like to see a session on how to make a complaint. How to do it properly and when it is appropriate to call  in the lawyers. I know that we are encouraged to 'trust your team' but there are occasions where that can kill you.

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