Need some support...

Hi all,

This is my first message here. I have been resisting, but here I am.

So I'm 37 years old. I was first diagnosed with brca in 2009 when I was 29. Did chemo, double mastectomy and hormone therapy. All good, then in 2013 had a small recurrence in the breast. Some radiotherapy and hormone therapy again. All good again, especially when I got pregnant (naturally!) and had the most gorgeous baby girl on the first day of spring last year (2016). Everything was great.

Then in December, when my baby girl was 3 months, they tell me it's come back and is in my bones and lung. I've been on taxol for 4 months - it has worked pretty well so am going to do another 3-4 months. 

Here's the kicker - I am a breast cancer researcher!!! So I know exactly what is going on, and what my prognosis is. 

I don't know... I guess I'm just hoping for some positive thoughts right now.... anyone? 

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Comments

  • adeanadean Member Posts: 952
    Well youve answered your own question you know to much.but as you know we are all different and maybe step back and not be the researcher. Love and big hug adean.xx
  • AfraserAfraser MelbourneMember Posts: 981
    Dear scientist

    So many people who visit this site are confused and bewildered and facing things they had never heard of.....or dreamed of. And it's so hard for them. And then there is someone like you, who works in this medically fascinating but scary world, who knows too much. And I can't imagine how hard that is.

    What I can imagine is the splendid women who face the same diagnosis, who are living good and meaningful lives, with their families and with hope. I am sure many of them can, from better experience than mine, share their ideas and encouragement. In the few years since I was first diagnosed, there have been all sorts of developments - you will know this better than me. You are responding well to treatment, that's a good start. Keeping going is the name of the game, you have a lot to keep going for. With very best wishes.
  • melclaritymelclarity Member Posts: 2,464
    @Scientist Welcome! I'm sorry you are here, but so glad too... It was only post treatment that I joined the Forum and I have to say its been so helpful, so many incredible women on here, supporting and sharing, its become a really safe place for me to be heard without judgement and also share. 

    I too think in your position as the Researcher and knowing so much must make it a little harder, than someone who is perhaps a little naive and just relying on the specialists. I'd imagine it would be a bit of a nightmare at times. I know there are many women on here living with Metastatic breast Cancer too, and living quite well with their ongoing treatments, so am hoping they too jump in with some great encouragement. :) 

    One thing at a time, you are certainly onto everything, but sometimes its important too to step back from it all, give yourself space and time to breathe, be in the Now and continue to enjoy your beautiful baby girl, I can only imagine the joy she brings :) 

    Sometimes we dont always know what to say, but I think here theres a real support because we all just 'get it' and free to express anything we like. 

    Keep doing what youre doing!! Big Hugs Melinda xo
  • rowdyrowdy Member Posts: 1,160
    Hi welcome to the site so sorry about your news. This site is about coming on and chatting to others who have some idea how you might be feeling.I'm sure there will be someone who will reach out to you who might be going through the same. Sending you a hug and some positive vibes xxx.
  • brightspacebrightspace Member Posts: 174
    Hi scientist big warm huggs it is crazy when it is what it is.
    we are very lucky to have so much new research trying to solve the met bc riddle.
    .i have been following some great info on met bc treatments health and new drug combination .detailed info is posted on the breastcancer.org us site .
    For me im er/prg positive soòooooo hoping that pbs will ok ibrance ..but reprt recommendation are not available when i looked late today
    Keep in touch Bright
  • fairydustfairydust Member Posts: 290
    @scientist what a journey. The only truth is that we all respond differently to our condition . You are an individual . So your pathway is unique. People defy the odds all the time I know that is a scientific fact.

  • nikkidnikkid Member Posts: 734
    Hi Scientist - a warm welcome but so sorry that you've had to join us. Even though you fall under the 'expert' category, it's overwhelming when you first get your diagnosis and then other issues and problems are thrown in your path. Here, on this forum, you can be freed from being a scientist and just be you - a woman, with breast cancer amongst a loving community of other women (and some men) who know intrinsically what you're going through. There is so much wisdom here....I hope you gain inspiration, as I have, from the shared insights of others.

    Nikki x
  • KatyJoyKatyJoy Rowville victoriaMember Posts: 124
    Oh scientist!, I hear you! I'm a nurse who works in palliative care. This whole experience has been so scary. It is hard when we know too much. When I was first diagnosed, I put myself in the hands of my treatment team, who were all strangers to me, and just let them tell me what I needed to hear. I couldn't bring myself to look at my path and scan results. I have looked at them now but I'm glad I didn't then as they were so scary! Sending you big virtual hugs, and Thankyou for the work you do helping us all to live the best lives we possibly can
  • nikkidnikkid Member Posts: 734
    And we give it back to you @scientist xxxxx
  • Jess_BCNAJess_BCNA BCNAModerator Posts: 476
    edited April 21
    Hi @scientist and welcome to the Online Network. If you have any questions about working your way around or accessing some additional help or support, please just let me know. I also wanted to let you know about one of our groups in the Online Network for women living with Metastatic Breast Cancer, if you do want to join or find out more, I have provided the link here: http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer
  • socodasocoda LeumeahMember Posts: 1,491
    Hi @scientist, welcome to the site. Thank you for your research skills and your contribution to keeping us all here.   ;)
    I am so grateful that  I have a background of ignorance when it comes to BC.  The only thing that I  can say to you  is that you are not a statistic,  you are a woman,  daughter,  mum and a fighter.  Don't  be ruled by statistics and figures - they are there to be changed and proven wrong.  Sending you a huge hug Xx Cath 
  • ZoffielZoffiel Regional VictoriaMember Posts: 926
    @scientist The sword hangs over all of us, it's just that some get to see it. That aspect of cancer is actually pretty interesing in a macabre sort of way. I have some very strange conversations with my shrink about it. The poor woman.

    When I look at what researchers are wanting to do it is only human nature to think 'I'm glad that doesn't apply to me' Then one day it does. It's a shitty place you find yourself but you are not alone.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,624
    Stuff the cancer, you wouldn't not have that little girl for the world. Keep up your treatment and don't be shy on pain meds and try to keep up with the little one as she grows. You might be unlucky in cancer but very lucky with a child to love. <3
  • wendy_h67wendy_h67 Member Posts: 355
    Hi , sorry to hear your news. And lovely to hear you have a lovely baby girl. I had breast cancer 20 years ago this September., and when I was told 5 years ago that the cancer had retuned in my bones I just couldn't believe it.  5 years down the track I'm still going .  There is alot more treatment available now as you probably know . Just stay positive and enjoy all the difference stages of your little girl growing up. Sending hugs and best wishes with your treatment. 
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