Mastectomy 42 triple negative diagnosis

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  • Riki_BCNA
    Riki_BCNA Staff Posts: 323
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    Hello and welcome@Shellbelle_75 The information below is what @SoldierCrab provides to new members to our online community.

    Navigating the online community formerly the what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  


    How to understand your pathology reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

    Please do not hesitate to contact the BCNA Helpline for support and to help you navigate all the information. 
  • Shellbelle_75
    Shellbelle_75 Member Posts: 65
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    Thankyou @Riki_BCNA
  • onemargie
    onemargie Member Posts: 1,264
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    hi there @Shellbelle_75 i was diagnosed aged 43 TNBC may 2016 , left boob grade 3 stage 2a (3cm tumor), had left mastectomy no lymph nodes involved scans all clear, i had 8 rounds of chemo - 4 AC and 4 paclitaxol 2 weeks apart for 16 weeks,no family history and negative for the gene test (you will probably qualify for this too as you are under 50 and have TNBC)  then 6 months later i had a preventative mastectomy of the right boob (my choice) and Im doing great, Im happy to chat anytime, just PM me if you like or I can see the others in our club have been tagged too @Spiv1803 (im pretty sure thats her BCNA name, I only know her by her actual name now lol)   is in WA also Im not near you (Qld) but sounds like @JJ70 is close by for a chat, I was sorry to hear about the other stuff going on in your life, there's never a "right time" for any shitty things that happen in life hey, rest assured you will get plenty of support on here with the crew, keep us posted on how you go @SoldierCrab is bloody awesome for advice with all your questions. big hug. margie xx 
  • Shellbelle_75
    Shellbelle_75 Member Posts: 65
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    @onemargie so good to hear from you Thankyou,the TNBC diagnosis has scared the living crap out of me,I am really trying to stay focused and positive and not let fear consume me as at times it’s suffocating 
    my surgeons appointment is next Monday re lymph node involvement 
    And treatment etc i have been told my tumour is Grade 2 but I don’t have a stage yet.
     Thanks for the advice and support I really really appreciate it 
  • SoldierCrab
    SoldierCrab Member Posts: 3,449
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    Hi Shellbelle_75
    I am now 6yrs out from diagnosis I had bilateral mastectomy and lymph clearance. I had node involvement and did 9mths of chemos  TAC, then AC then paxitaxel then another due to neuropathy.  then rads 
    I am cancer free and reclaiming life. 
    I get the being strong single parent since '99 with 3 still at home. 
    2 with autism. 

    Take it one day at time and dont google. 

    soldiercrab

  • Shellbelle_75
    Shellbelle_75 Member Posts: 65
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    @SoldierCrab Thankyou! You are an amazing woman! Tell me what do you think kept you strong and focused 
    I am at the start of your journey,if you think back what drove you?
    My huge drive is my boys as a sole parent but I am wobbling currently and trying to collect myself 
  • SoldierCrab
    SoldierCrab Member Posts: 3,449
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    hi Shellbelle, 
    My kids wanting to be here for them  then 15, 17, 25. 
    seen my daughter grad school now in her 3rd year of uni 
    seeing my boys become more independent with NDIS supports etc. 
    Accepting help and knowing when it was OK to just be ...... 
    mediation helped me 
    I had a great Breast Care nurse and a few very supportive friends. 
  • Shellbelle_75
    Shellbelle_75 Member Posts: 65
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    @SoldierCrab I hear you! Previous to this I worked full time for an NDIS provider as a support worker I loved the role and plan on returning :) 
    thankyou for your thoughts 
    count down until Monday for my results and treatment...
  • JJ70
    JJ70 Member Posts: 983
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    @onemargie are you interested in sharing your story on my campaign: Can at 40. Do at 45?

    If your on FB, here is the link. Let me know if you want to know more. Basically it is a campaign for government to spend $$ on awareness of free mammography from 40 and to lower the invitation age to 45.

    Anyone can like the page ladies.... but I am collecting stories of ladies diagnosed in their 40's. Could save some lives!!

    https://www.facebook.com/Can40Do45/
  • onemargie
    onemargie Member Posts: 1,264
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    @JJ70 sure love I’m in I’ll check it out and contribute I also had the dense breast thing going on too. Had I known that it can increase the risk i would of chopped the buggers off before bc got a chance to rear it’s ugly head 😀
  • Shellbelle_75
    Shellbelle_75 Member Posts: 65
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    @SoldierCrab can I ask please did you have - Targeted therapy that I keep reading about that is additional treatment in regards to treating the HER2 positive protein?
    i thought I had read it is an additional intravenous treatment that is given like chemo to specifically treat the HER2

  • SoldierCrab
    SoldierCrab Member Posts: 3,449
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    NO    I had what was standard TNBC treatment back then surgery then TAC,AC, Paxitaxel, then FEC think it was ..... 

  • Shellbelle_75
    Shellbelle_75 Member Posts: 65
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    Thanks @SoldierCrab I believe the targeted treatment is only within the last 3-4 years x
  • Shellbelle_75
    Shellbelle_75 Member Posts: 65
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    Ok so HUGE LEARNING CURVE..... I am triple POSITIVE NOT NEGATIVE. I misunderstood the terminology 
    ER +
    P +
    HER2 +
    so it appears I am looking for triple positive members to also chat to x