initial diagnosis of stage 4

wendy55wendy55 Copper Triangle South AustraliaMember Posts: 139
edited November 2016 in Community news and events

Hi everyone, I was lying in bed last night thinking thinking as you do, and i am wondering just how many of us out there were initially diagnosed with stage 4 metastic breast cancer, I had been having my mammograms every two years and then three months before my next one I had excrutiating pain in my left breast, went to my gp, straight to adelaide for ultrasound mammogram and three fine needle biopsies, then off to breast surgeon as we thought it was early breast cancer, he then ordered the scans and bone scan to do the staging process, when we went back for results, it was off for a ct of my liver there and, fortunately his rooms were adjacent to a radiology rooms, so the results were given to him in 20 minutes, then we got the news, it was in my liver, so then the merry go round really started, I went in to FIX IT mode, we went and so my oncologist, and fortunately for us he is fantastic and has an amazing skill set, so then it was chemo, then tamoxifen, then feamara, which worked well for 9 months, now its affinitor and aromicin, last mri showed up more spots on my spine about 30 or more, now its more scans on Fri.30th jan, results on 3rd Feb, app. with radiation specialist on Feb9th due to a lot of pain in my hip, I will see him and see what he has to say, and so it goes on and on.

However the reason for all this is to try and find out just how many of us on diagnosis received the news it was already stage 4, I have had the braca gene test and that came back inconclusive, I have to believe that it was just the luck of the draw, even though I had had regular mammograms since I was 40, this came about because my mother had just died of non hodgkins lymphoma and it really scared me, I had to really push my gp to have a mammogram at that age but for peace of mind he agreed, my query also is how long would it take for stage 4 to set it self up in my body no one seems to be able to answer to question and it makes me feel guilty that I should have done more,somehow, not sure what I could have done though, well thanks for reading this, and any information would be helpful.

Is there a database for women with an initial diagnosis of stage 4, and how many of us are there with the advanced cancer diagnosis in the country,

many thanks and look forward to hearing from anyone with information.

Comments

  • Marls59Marls59 Member Posts: 30
    edited March 2015
    welcome to this wonderful site where we can all vent, tell our stories, ask for advice and just feel we are among people who totally understand.

    I am so sorry about your diagnosis, it must have been a huge shock especially when you were getting regular mammograms. I am sure some of the other Ladies who have a similar diagnosis will blog and be able to help with data information or let you know where you can obtain it.

    I had early Breast cancer and finished my treatment eight months ago so I consider myself extremely fortunate.

    I wish you all the very best with your treatment going forwards, please stay on this site, there is always someone here.

    Sending you big cyber hugs.

    Marls
  • Lynne48Lynne48 Member Posts: 27
    edited March 2015
    I am so sorry to read of your diagnosis. I can relate. I have just been diagnosed with stage 3. After an agonising 3 day wait, I found out on Monday, that my bone & CT scans were clear. During that 3 day period I was doing all the reading I could on Stage 4. Like you, I was wondering how on earth it could have got to this stage without my knowing. My surgeon said that my cancer is very large (8cm across) & has probably been growing for the past 8 or more months. Goodness knows how I could possibly have missed that!
    Wishing you all the best with your treatment. As my surgeon said "there is nothing to be gained by looking back, concentrate on what you need to be doing now", or words to that effect.
  • KleaKlea Member Posts: 83
    edited March 2015

    I too was staright to stage 4 after a clear mamogram 6months earlier. I had on going bakpain that eventually was diagnosed as BC. Absolutte shock as you can imagine I too was healthy and active. I am sure there are plenty of us. My lump appaently was very lose to chest wall and I was told that it was probably missed on mammo due to the plates can only go so close to our chests. I wonder how many of us are like that misssed .

    That said I am 18 months on and well on femara and denosobab and feel good sometiems my bak aches but other wise feel well. 

     So good lluck I have been told i wcanget old wih this by my onc so it aint over yet. Hang in there

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