How did you find out about BCNA?
FLClover
Member Posts: 1,573 ✭
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
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Comments
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@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.0 -
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!
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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.1
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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,
wendy552 -
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.3 -
awww, thank you for the kind words @Locksley .... what comes round, goes round ..... I wasn't sure whether to use the Hug emoji, the LOL or the Like! LOL xx
@wendy55 - there are some mongrel surgeons/GPs who just have NO CLUE on how to be empathetic towards their patients.
I am so sorry that you were one of the unlucky ones, to get one xxx. Big hugs xx
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From what I can gather I am one of the lucky ones!
I dutifully had a mammogram when the Breastscreen bus came to town. The woman who did it was a little terse but anyhow we got over that but deep down I figured something wasn't right!
A short time later a letter arrived inviting me to Breastscreen Parkville for a second look. We (Hubby and I) arrived at the allotted time and immediately put with a Counsellor and given a run down of the day, what to expect, and that she would be at all my tests. I joined the crowded room of women in gowns, turned out 5 other locals were there as well as and was soon called in for a Mammogram and then Ultrasound and then told you are going straight to the Surgeon.
I wasn't prepared to go back into the room full of women in gowns, especially with locals there as I didn't want to be the source of gossip before I knew precisely what was the deal. I insisted that hubby be with me for the Surgeon, and he was after they found him as he wasn't allowed to sit in the room full of women in gowns. It felt like a cast of thousands was with us at the introduction to the Surgeon, including the Counsellor. No tears from me! She then took us to one side and gave us some coping mechanisms and we waited our turn for the biopsy to confirm what the Surgeon said, 99% certain you have Breast Cancer, pathology will confirm and you will be having a mastectomy.
Once diagnosed the Counsellor gave me a box full of books from BCNA, My Journey kit including a diary. Hubby read them all but I was selective and only read a couple prior to surgery. Once in Hospital I was then given a Kit from Berlei, bra, book specific to my type of cancer, BCNA Strengthen Your Recovery Pilates DVD, a cushion, drain bag and another bag to carry my xrays...........very well looked after. My Surgeon also had 2 Breast care nurses on staff who came to my room every day and rang each day for the first couple of weeks once I was at home.
It was a couple months before I joined the BCNA network and then I found the network was in turmoil, snitchy comments as the format was changing so I didn't bother again for a few weeks as I was put off by the snitchy comments but eventually I started to see others were in the early stages, in shock, totally confused and needed a friendly nudge from someone who had been through it and so started my association with BCNA forum.
This has turned into a missive, sorry, but as I said at the start, my path took me straight to BCNA and all that it offered and I only hope that in time that is more available to all across major clinics et cetera
Best wishes to all
Take care
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Hi my ( fabulous female) GP suggested I look at the BCNA website when she gave me my diagnosis.
The other great piece of advice she gave me was to take someone who cared about me ( in my case it was hubby) to my meeting with the breast cancer surgeon as I would likely not take everything in.
This was on the Tuesday and she had me booked in to see the breast Cancer surgeon on the Thursday.
To be honest I was in so much shock I wasn’t taking a lot in but I did have a brief look at the BCNA website as well as printing out the breast cancer brochure on the Cancer Council website.
I didn’t really have a good look at the BCNA website again until after my mastectomy and my breast care nurse at the hospital ( who I only saw the once) suggested it to me.
I have raised this before ( as has FLClover) but believe it would be good if more women were made aware of BCNA when they first get their diagnosis , not sure how to achieve this but if identifying a problem is the first step to finding the solution, I have done that.2 -
I googled Breast cancer forums and this one and an american one came up. For some reason I couldn't get on to join so I just followed the threads without posting for months before trying again1
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I was part of a now defunct BC support group, founded by some pretty heavy hitters in the medical and consumer spaces. When that group folded we asked BCNA to take on some of our records, which they did. From there I was asked to participate in early discussions about the online forum and material for newly diagnosed folk, which I did.
The forum was very different back in those days and, to be honest, I didn't think it would really take off as it was quite stilted and driven by the moderators. Proved wrong there, obviously.
I've seen a lot of changes since 2010, many of which would have not pleased me. It's probably not something I would engage with now if I was newly diagnosed--too many stale announcements, stuff that is not related to the disease and a focus on fund raising that irritate the shit out of me.
Native curiosity about what might happen from here and habit are the only things that keep me here now. Each to their own, I suppose.2 -
I think FLClover’s first post above is about the BCNA site as a whole , not just the online forum.
The site itself has a wealth of information which even now 12 months on I am still dipping into.
The forum is just part of the site although in my view a very important part .
Issues about how to improve the usefulness and functionality of the forum for the members is a discussion worth having and you will never please everyone but I know that many women have gained great succour from the online forum.1 -
On the Sunshine Coast QLD the breastscreen clinic made sure I left with BCNA information and resources .I’ve used BCNA since day 1 to educate myself and ask questions through forum . It’s been invaluable .3
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My then BC nurse gave me a MY journey kit back in the days when they were in a box.... I got online in the middle of the night we all know the no sleeping as we are stressed out time... I became a member and found the forum slow back then end of 2012.... it has changed but I have met and made friends on here.2
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My surgeon recommended BCNA for information. He suggested getting online information from BCNA rather than google2
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I was diagnosed at the Wesley Breast Clinic and whilst that time, almost 2 years ago, seems a blur, the breast care nurse made contact and put me straight onto BCNA. I went on the site and stumbled across the forum and found it to be a wealth of advice and support. Like a lot of us, I just read and read posts in the still of the night when I could not sleep and one day I finally posted. Whilst life has become busy again I really hope to keep checking in like so many who have gone before me as their knowledge and kind words were part of the reason I was able to put one foot in front of the other and get through it. I also know that when you are first diagnosed, you desperately want to hear from people who have been through it and are thriving to reassure you that you can do it.
I also read and listened to the resources offered on the whole site - factual and current. 🌸🌸4
