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wahine73's avatar
wahine73
New member
12 hours ago

New diagnosis

Hi 

Im newly diagnosed and have Her2 negative with ER/PR positive. Invasive lobular carcinoma stage 2.

Not sure what my treatment plan is yet. Does anyone know what its likely to be.

1 Reply

  • Hi wahine73​ , are you a Kiwi??  I lived in Auckland for 15 years & loved it!! 😊

    I am so sorry to see you joining our select little group  …. Whack up ANY questions that you may have, as we’ve all ‘been there, done that’ and all of us combined, should be able to give you a helpful answer. xx

    Everyone remembers the shock of hearing the ‘diagnosis:  “You've got breast cancer” ..... Causing sadness, distress and even anger.   It really mucks with your brain, sometimes even more than your body!  It can be highly stressful & upsetting in the early days of diagnosis - so if you feel a bit overwhelmed by it all, give the BCNA Helpline a bell on 1800 500 258 (Mon-Fri, 9-5) for a confidential chat with one of the Mods xx.

    Whilst everyone's diagnosis may be slightly different - My own diagnosis was similar to yours - I had a lumpectomy followed by radiation & then Hormone suppressing meds for 6 years.  I finished them mid last year.  I was in hospital overnight - but for some, it may just be day surgery!  (I live in a regional area, so the surgeon suggested I stay overnight, so I didn't have to travel home the same day.)

    BCNA has a private ILC group that you may like to join, where specific ILC info is posted ... as it presents 'differently' from 'normal' breast cancer.  It doesn't form a 'lump' as such - it usually grows slower & grows more like 'strands' rather than lumps - hence it is more difficult to spot on a mammogram, specially if you have dense breast tissue.

    Make sure you take a trusted friend or relative with you to all your meetings from now on (for physical and mental support - and also a 2nd set of ears!) & also consider recording them too, on your phone xx. It is almost impossible to remember everything that is said & this way you can go back over it in the quiet of your home & take notes. xx

    Also, make sure you stay away from “Dr Google’ (difficult tho it is) - as a lot of info there is not only out of date - it probably also isn’t even relative to your own diagnosis.  Going down that rabbit-hole will also muck with your brain.

    Consider listening to Charlotte Tottman's Podcasts on her own experience with BC - as she explains it all very well xx  She is a specialist breast cancer Counsellor who had a double mastectomy following her own diagnosis, choosing to stay flat. She was surprised at her own reaction to the news/surgery/treatment, as she'd been counseling others for many years & thought she 'knew it all'!  She has done 2 ‘podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. http://www.drcharlottetottman.com.au/my-podcast.html

    Check out this thread too - there is a lot of info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

    take care & all the best with your upcoming appointments