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Welcome New Members 12th January 2022

Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 179
edited January 19 in General discussion

You have found your way to Breast Cancer Network Australia’s (BCNA’s) Online Network. This is a forum where you are not alone and can engage with generous members who provide meaningful support to each other. You can share as much or as little as you feel comfortable with to other members. Please explore our various Groups for members who are looking for greater peer-to-peer support.   

The following links may also be helpful in getting you started:  

Our long-time members (newbies too!) are a wealth of information regarding the useful discussion topics and information available through BCNA’s Online Network, therefore please do not hesitate to post your questions.  You have the option to add details about yourself to your ‘profile’ and if you would like more targeted member responses, you may like to add where you live ( eg. Sydney, Melbourne, regional Victoria etc).  

If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @MichelleP_BCNA @Anna_BCNA @Kate_BCNA . 

Please note: The online network is not moderated by staff/volunteers on Sundays, however if you need something actioned the quickest way to resolve your query is to contact the Member Support Team via email [email protected] or phone 1800 500 258 Monday to Friday 9 am - 5 pm AEST.

Comments

  • Nay64Nay64 Rockhampton Member Posts: 1
    Thank you. 
    Not happy to be here but happy to be surrounded by others who know the feelings and have walked the path before me. 

    A bit about me: I’m 38 with a gorgeous husband and three beautiful kids. Our family is all complete, with our youngest heading off to school this year. We were all getting ready for living our life of happy when I got the diagnosis. The 31st December, I was diagnosed with Grade 3 invasive carcinoma in my left breast. It’s quite a large lump at 5x4x2cm so talk has been that I will have some neoadjuvent chemo first before surgery. 
    I made contact with a breast care nurse and she walked me through my diagnosis and let me know that my cancer is a triple positive so although it’s aggressive, there is specialised treatment for it with herceptin.  There was also enlarged axillary nodes found on my ultrasound but no biopsy done for that so that needs to be checked as well. 
    I feel like I’ve been waiting forever when In reality, it has been 12 days! I just want to get something happening. I’m sure that’s a normal response. Anyway, I have my first MDT meeting next Thursday so hopefully I’ll have some more answers then. 

    Thanks for the welcome and love to all others going through this. Xo

  • arpiearpie Mid North Coast, NSWMember Posts: 5,726
    @Nay64 - I am So sorry to see you join the club no-one really wants to join .... but you are in the right spot for support & info from those who've 'been there' ... ask away any question .... there are no questions off-limit here. xx.   Terrific that you've made contact with your Breast Care Nurse already - You can also chat with the Helpline here too (the phone number is up the top of the page in the Blue Banner.)

    It sounds like you have a lovely family - and I hope you have lots of support from all your family & friends, too.  You might like to join the Young Women's group .... where conversations are totally private ....

    When you have a spare 5 mins, jump onto this thread to read up on some other areas in the forum that you may like to look at ..... there is a link at the bottom for 'tick sheets' to help formulate some questions & ideas on what to take to hospital when you do have your surgery. 
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    All the best for your team meeting next week xx  
  • JohannJohann Member Posts: 4
    Hi, thank you for welcoming me.
    I have just had my lumpectomy and sentinel node biopsy yesterday. Feeling relieved that this first part is over but still I  a bit of shock that I am where I am.
    Waiting now for results to see if the cancer has gone to lymph nodes and begin treatment (hopefully no further operation).
  • arpiearpie Mid North Coast, NSWMember Posts: 5,726
    It is good you have your plan, @Lbazz230281 ... tho the waiting still sucks ... just keep as busy as you can, doing stuff you love xx

    @Johann - great that you've had your surgery - sadly, the waiting for results really sucks .... but make haste slowly, don't overdo things as you recover & all the best for your results xx

    Take care, ladies


  • sim68sim68 Member Posts: 3
    Hi and thanks for the welcome, although I still feel like I’m talking about someone else, not me with all this. 
    I was diagnosed in Nov, invasive ductal, grade 2. Had excision and sentinel node - nil spread yahoo in December. Will have to go on oral therapy after further surgery.  Due to family history I am having bilateral mastectomy and reconstruction in Feb. Just currently going through options…I thought the decision would be easy but apparently not. 
    I am very lucky to have lots of support around me…family, friends, colleagues and being a nurse my colleagues are gold. 
    Hoping for a decision this week and then can move forward. This site has been invaluable to me so big thanks 🙏 to everyone for their contributions and stories. 

  • FernwehFernweh Caboolture, BrisbaneMember Posts: 8
    Thank you for the welcome.
    I am 36 and have been diagnosed with what was a 1cm grade 1 invasive carcinoma on 30 December. However, PET scan and MRI then revealed a 8cm invasive carcinoma.
    I have a lymph nodes biopsy today (hopefully it is still grade 1) and mastectomy next week (I think) follower by radiation and chemo.
    My surgeon has been great, but I have not been in contact with anyone else so far.  I just moved to the area and the GP I have seen before diagnosis is going to be on leave for a few weeks and I do not think she is best equipped to assist me in this journey. There is also a shortage of available GP in my area so it makes it almost impossible to change.. I am scared that I do not know what support is available and/or don’t know how to access such support and that I may be missing out on something critical..
    Looking forward to receive the love of this community.
  • Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 179
    Hi @Fernweh, thankyou for sharing your story and hope that you find some valuable connections here with online network members.

    You mentioned you are worried that you may be missing something critical, therefore I thought I would share BCNA resources and external information that may be of support to you:

    Cancer Council - Your Guide to best cancer care

    https://www.cancer.org.au/assets/pdf/breast-cancer-optimal-cancer-care-pathway This resource can help to guide you as to the national standard of high-quality cancer care that all Australians should expect. 

    Breast Care Nurse

    Your treating hospital should link you in with your breast care nurse over the coming days , however if you haven't received a call you can  contact The McGrath Foundation  provides specialist breast cancer information and their Breast Care Nurses can be contacted on 1800 183 338. Referral to a McGrath Breast Care Nurse is available to you for free, whether you’re in the private or public health system. McGrath Breast Care Nurses can support you from diagnosis and throughout your treatment and provide support for the various stages of breast cancer.

    BCNA’s My Journey  resource which is accessible online or as a downloadable app. This resource provides high quality, evidence-based information which can be tailored to your  individual diagnosis and which provides insights from others diagnosed with breast cancer (It also has a symptom tracker). It is easy to access via computer, tablet or smartphone.

    My Journey was developed with assistance from breast cancer specialists and offers:

    •             Information and support tailored to specific needs at all stages of the breast cancer journey including DCIS, early breast cancer and metastatic breast cancer.

    •             Immediate updates as new insights, research and clinical trials become available

    •             Videos, webcasts and podcasts

    Charlotte Tottman’s Podcast mini series ‘What you don’t know until you do’ https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/ 

    You may enjoy listening to Dr. Charlotte’s journey, which lays out her lived experience, provide explanations of psychological triggers and responses, and practical strategies that may help someone on their own cancer journey.

    Just Diagnosed: what’s next?  https://www.youtube.com/watch?v=NRW7g5tBx5A This is an on-demand webcast for people recently diagnosed with breast cancer.  This video will provide practical tips about the information need to help you through this time and guidance on how to make the treatment decisions that are best for you.

    My Care Kit

    My Care Kit for women who have recently had breast surgery. It contains a specially designed Berlei bra and soft form/s, provided through a partnership between BCNA and Berlei. Available free of charge to women in Australia who undergo surgery for breast cancer, and is ordered by your health professional (or you can call our member support team 1800 500 258)

    I hope this above information if helpful for you. If you would like to chat with one of our Member Support Team please contact us on 1800 500 258. We can discuss and identify any additional supports you need.

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