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FLClover's avatar
FLClover
Member
4 years ago

How did you find out about BCNA?

Hello ladies! 
I hope everyone has been keeping safe and healthy 😊. 
I wanted to ask everyone who wants to share, how you found out about this site, BCNA? 
I think it’s really important for women (and men) to be told about it as soon as they are diagnosed, before they have even seen their specialist. I think it would be really helpful to be informed about all things bca from here before starting the dreaded ‘trip’, as getting advice from ladies who’ve done it is extremely helpful and supportive. I think we all know how we felt when we first got diagnosed, so terrified, petrified, mortified, lonely, lost, confused, frightened, surreal, panicky, to say the least (or was that just me? 🤔). And we all know how much our loved ones, despite them trying so hard, can’t and don’t know what to do or say at times, which makes us feel even more lost, confused and lonely. I felt a strong need to find others like me, and was very grateful when I found the pamphlet about BCNA in my pack with the free Berlei bra. However, I found it after my main surgery, which was about two months post diagnosis. I really wished I’d found it pre-surgery, because a lot of my anguish and depression in regards to my surgeon could’ve been avoided. I mentioned this at the BCNA zoom meeting we had a couple months ago, as I felt it was important to try and get those pamphlets out to gps and screening centres, so more women can know about the site ASAP once diagnosed. 
So if you’d like to share, I’d love to know how you all found out about it 🙂. 
M Xxx
  • When I was first diagnosed I went through all the emoitions you have listed @flclover and @arpie.   I wasn't advised to have my husband attend appointment he was having trouble finding parking.  I said I would go alone as I wasn't expecting to be long.  After surgeon said the words breast cancer I don't remember much else.  A breast care nurse came into the room and chatted with me.  She gave me a pack of information and handed me bcna flyer and suggested I have a look at it.   When I was brave enough to have a look I read nearly every post I think.  It took me a while before I posted a comment.  I was so grateful for the many members who answered my questions and fears.  Just knowing there was someone else who understood how I was feeling and that my fears were real without telling me to think positive or have a juice cleanse.
    I have made life long friends with members who helped me through some days I needed a helping hand or even lending an ear.  I'm so grateful for the generosity of older members who give up their time to help newbies.   @arpie if there was a badge for miss congeniality of bcna it would be you.   I also like the hug emoji that can send another member a warm and fuzzy to support them so they know they are not alone.
  • Hi @FLClover,
    what an interesting question,
    when I went to the breast surgeon, thinking that I only had early breast cancer,after my staging scans, and we went back to see him to get the results, his answer was this"I cannot help you, you need to see an oncologist oh, and by the way the stats are 7 years",first of all what a way to be told your diagnosis, and the last thing he did was to give me a copy of "My Journey" as I walked out of his rooms!!!, so thats how I found out about bcna, after some time to digest everything and a visit to the oncologist, I did have time to sit down and read the book, I still have it over 8 years later.
    When I met my now retired breast care nurse and getting to know her, she told me that she had made appointments with every gp surgery in our area and I must add this means a journey of several hundred kilometres up and down the peninsula where we live,her aim was to leave information for women who were diagnosed with breast cancer,  I might add, that at our last bcna support meeting, the 'My Journey" book was a topic of information as several of the newly diagnosed ladies there had not heard of it, which just says to me, that, somehow we need to get more information out to radiology clinics, gp clinics, specialists centres,breast surgeons etc, but, how do we do that!!
    I also have the Hope and Hurdles pack as well for women with MBC, all in all very very informative,

    wendy55
  • The day I was diagnosed with breast cancer at Breast Screen when I was recalled, they gave me a BCNA "show bag".  I recall joking and saying, oh lovely, a show bag, does it have any chocolates in there also?  Jokes aside, I didn't go on the network until about 4 months after being diagnosed.
  • Great question!

    I agree with you 100% @FLClover - it is a real shame that ALL GPs and Breast Cancer Centres & Surgeons don't have a 'pamphlet pack' at their front desk (or in their office) to hand out to patients (men and women) as soon as they are diagnosed with BC.

    Jumping onto BCNA straight up & chatting with those who've already been thru it , learning the tips & tricks that make it easier to go thru surgery & recovery - would save a lot of anguish, depression, fear and answer a lot of the questions that fill your head (that you forget to ask the surgeon when you see them!) .... ALL of which, would assist in a better 'attitude' going into surgery and your post op recovery.

    It was a friend of mine (a nurse in Qld) who had been diagnosed 3 years previously & suggested that I join BCNA (sadly, she went on to develop mets after her '5 year clear' - and passed away late last year.) .... She was my major mentor in the early days of my detection & diagnosis- for which I am eternally grateful.  

    I joined BCNA around the same time as I had my surgery (3 months after the lump had been detected.)  I wish I'd joined earlier.  It is interesting going back to your very first post & just re-reading what you put in it & how others jumped on to help you.  I have made firm friends with a lot of those who helped me in the early days & miss the interaction with others who have 'moved on' with their lives & not active on the forum any more.   Well done them!  
  • @FLClover
    i assume that someone at my surgeon’s or oncologist’s practice, probably the former, did something as I received an information package and diary (never saw a bra). I confess I used very little of it, and didn’t participate in the network then, being well supplied with information by my oncologist and well supported. But I was always aware of BCNA, and also aware of how helpful a friend who’d been through it all before was at one difficult point. I joined the network once I was recovered, mainly to share experiences with those still going through treatment.