Her2 positive

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Cheri
Cheri Member Posts: 38
edited September 2023 in Newly diagnosed
Hello I'm 40 and recently diagnosed with her2 positive. No family history of breast cancer. My sister and maternal cousin recently diagnosed with lobular cancer. They are having surgery. It's been a Whirlwind recently. The professionals say it's early, the treatment is going to be chemo , waiting for my medical oncologist appointment to find out how long etc. Surgery then hormone tablets. I'm struggling to understand why I need chemo first. If anyone had or has her2 I would be grateful to share your story. Thank you kindly.
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  • arpie
    arpie Member Posts: 7,677
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    I am SO sorry to see you join our exclusive club, @Cheri .... hopefully someone that is Her2+ will jump on soon xx.   Like your sister, mine was Lobular ... Like you, there was no family history of breast cancer (any cancer!) in my family (mine all died from heart attacks) - so it is a bit of a shock!  You can be angry, sad, frustrated - all at the same time & these are totally normal reactions to the diagnosis.  

    Charlotte Tottman (a BC psychologist who was diagnosed herself a few years back) has amazing insight into her own reactions to her diagnosis - and was amazed at how hard it hit her, even tho she'd been counselling others for years ..... it was only after SHE was diagnosed, that she fully understood just how much it changes you ..... She has a very 'easy' speaking manner and most can identify with the emotions that she went thru at the time too.

    You can check out both 'seasons' of her podcasts here:
    https://onlinenetwork.bcna.org.au/discussion/25505/season-2-podcast-series-what-you-don-t-know-until-you-do-with-dr-charlotte-tottman#latest

    Direct link to the podcasts here: (Start with No 13 - the very first episode.)


    Re chemo prior to surgery - this is fairly standard with some cancers, to reduce the tumour size prior to surgery ... 

    Is your Oncologist/Medical Team aware of your sister & cousin being diagnosed recently as well?  They may be keen to see if there is a genetic link? Have you been genetically checked as part of your treatment so far?  Do you have daughters?  

    You may also like to Check out this thread, it has a heap of info on the Blog & other areas that you may also be interested in .... be it art & craft, gardens, meals, pets etc - even funny bits (we all need a laugh, now & then!) 

    There is also a link to some 'tick sheets' where you can print them off & 'self assess' your mental & physical 'state' ..... to take along to your Team Meetings - sometimes it is easier to give them a copy, than to actually talk about how you are going xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care and all the best with your Onc appointment next week xx. 

    Let us know how you go - you can use this thread as a bit of a 'diary' of your treatment & emotions xx
  • Cheri
    Cheri Member Posts: 38
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    @arpie Thanks for your response. Yes, I have told the medical team about my sister and cousin. They will most likely carry out genetic testing aswell. Yes, I have 2 girls. I will check the video out, thank you. So good to hear from someone who has been through this experience, I appreciate the information and your response.
  • Blossom1961
    Blossom1961 Member Posts: 2,395
    edited September 2023
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    @Cheri I am Her2+ and had chemo first. It reduced the size of the cancer so much the Onco asked if she had the right breast 🤣  I loved having the knowledge that the chemo actually worked. I wouldn’t of had this knowledge if I had the surgery first. 
  • Tarma
    Tarma Member Posts: 73
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    Hey @Cheri 
    Welcome 😊 like you im Her2+, but im not hormone + 
    Im having chemo first, in my 2nd cycle now.. 
    I took the advice of my Oncologist without hesitation. He assured me neoadjuvant is the best way to go.. 🤞🤞

    Keep us updated😊
  • Afraser
    Afraser Member Posts: 4,388
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    Hi @Cheri

    I was hormone positive and didn't have chemo before surgery, but that was 11 years ago, with a reasonably large tumour. It's fairly common now to have chemo first as this may reduce the scale of surgery required. I also had one cancerous lymph node so chemo for me was largely to eradicate any cancer cells beyond the breast.  

    Best wishes.
  • Cheri
    Cheri Member Posts: 38
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    @Blossom1961 @Afraser @Tarma Thank you all for your responses, it gives me such reassurance. Thanks for sharing your journey, may all be well with you all 
  • Cheri
    Cheri Member Posts: 38
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    @Tarma how you going with the chemo?  I am having my second one on Tuesday. 
  • Cheri
    Cheri Member Posts: 38
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    @Tarma ahh sorry to hear about the side effects, glad you are coping though. I think chatting to people (like here) and supports groups and loved ones definitely make the journey a little easier or bearable. I'm going ok...let's see how I go next week. 

    Hoping your side effects simmer down , xxx 
  • Tarma
    Tarma Member Posts: 73
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    @Cheri Thankyou Lovely 😊

    And I absolutely agree, this and the my journey app, I love them ❤️ 

    Catch up soon xxx
  • IlonaC
    IlonaC Member Posts: 14
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    Hi Cheri
    I just got diagnosed with her2 positive and they started me on an aggressive chemo treatment to reduce the size of the lump pre surgery.
    1st round done mild symptoms so far.
    Good luck with your treatment I hope the symptoms improve for you
  • Cheri
    Cheri Member Posts: 38
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    @IlonaC Hi, Ilona , that good to hear your going 
    Well. Thank you , my symptoms have been pretty mild thankfully. The hair loss is what has been most challenging but hey at least the treatment is helping to make us better. Everything of the best, here if you want to chat xxx
  • IlonaC
    IlonaC Member Posts: 14
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    Yip hair loss is going to be hard..the thought of no hair had never crossed my mind before cancer.
    But you are right beating cancer is more important.
    Hope you are doing well too xo
  • riss81
    riss81 Member Posts: 31
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    Hi ladies, Just wondering if you have had the cold cap offerd to you to help with hair loss?.Also I have found some great eyebrow tattoos and there are some amazing wigs out there also. I know it's not the same as your own hair but it may help take the ege off a little. I'm about to start chemo and have already orded my tattoo brows so I have them here when the hair starts to fall. Good luck guys from one BC sister to another. 
  • Cheri
    Cheri Member Posts: 38
    edited November 2023
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    @riss81 all the best with your treatment.hope your side effects are minimal.

    I had made another post about the cold cap, someone posted a calculator for how much it may help and when I input my details it was a low chance so I did not explore further.

    Thanks for the tips on the brows tips and wigs , I also had mine ordered prior, does help to be prepared. My brows were previously microbladed, so that helped too.

    Here for you BC sister xxx