Invasive Lobular Carcinoma Diagnosis

Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,134
Moderator moved @LJS comment to own discussion post in 'Newly Diagnosed':

LJS Brisbane, Qld

I have just been diagnosed with early stage invasive lobular carcinoma in my left breast. The shock and horror of the diagnosis has left me a mess. For a very healthy person, I couldn't believe it. Always had my two yearly mammogram and no symptoms at all! The staff at Breastscreen Qld have been amazing...so kind and empathetic. I am now to make an appointment with the surgeon. Trying to stay positive and work out how to tell my family is so hard. This online group seems a wonderful support. Be strong everyone says. So hard.

Comments

  • arpie
    arpie Member Posts: 8,172
    edited July 25
    So sorry to see that you've joined our exclusive little club, @LJS ... the club no-one wants to join!  

    Yes, the shock/horror after the diagnosis is so real ... I felt the same & remember it well.  Like you, I was totally healthy in body & mind at the time (less so now!) .... and my regular Breastscreen totally missed mine (as it was Lobular too & it can be more difficult to identify on Mammogram, specially with dense breast tissue, which I had at the time!)   Feel free to join the Private Lobular Group, where we put lots of updates on ILC as we find them .... just click on this link & hit 'join'
    https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc

    Re telling your family (and friends) .... there is no easy way of doing it, but I found that an email was good, as it helped me keep control of the emotions (I'm a bit of a sook & cry very easily!) .... Also, you don't have to keep repeating it all, over & over ..... then let them know that you'll update them on details as they come .... so that you don't have to field so many phone calls.  They will undoubtedly want to help you ..... and it could be things like mowing your lawn, picking up the kids from school/sport - or even supply meals ..... lean on them & accept any help they offer - as it is a win/win situation - they want to take pressure off you & it gives you a break xx. After your surgery, you may be limited in some areas for a little while - so all the more important to have someone there to do the household chores etc.

    We have many members in & around Brisbane - they should be able to guide you on facilities nearby .... I know that they have free programs aim to improve your quality of life and help you navigate the sometimes very daunting cancer experience - so well worth contacting them (probably after your surgery.)
    https://www.wesley.com.au/services/the-wesley-hospital-choices-cancer-support-centre

    Also check out this thread for lots of info on the forum (including what to pack for hospital and also some tick sheets to monitor your mental and physical health as you continue thru your treatment plan.)  We also have a bit of fun, showing off our art & craft, gardens, pets & even have a laugh (god knows we need a laugh now & then!)
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

    Take plenty of deep breaths ..... take one day at a time, one hour, if needed ..... and do NOT use Dr Google!  A lot of info on there is out of date & not relevant to your diagnosis - and will just scare the pants off you .... so stear clear of Dr Google!!  ;) 

    take care & all the best xx


  • Aska
    Aska Member Posts: 79
    Hi @LJS
    I had the same diagnosis same side,  April last year. Mine was estrogen and progesterone positive and negative for herceptin. I clearly remember that kick in the guts feeling when I heard the word,  it's cancer,  come out of the drs mouth.  From then on it was a whirlwind of appointments and tests.  Once the plan was decided on things for easier.  Take care and crumble and cry when you need,  but also know that you've got this!
  • Tri
    Tri Member Posts: 201
    So sorry to hear about your diagnosis @LJS - this is a testing phase. 🌼🌻🌸 I endorse the great points already made in the thread. Glad you have found this forum, there’s a wealth of care and practical support. 
    Telling our family and friends is tough but take care and do so at a pace that suits you: there’s no right or wrong way. I sent the link to BCNA information sheets to concerned family and friends about the different cancer types, to read in their own time, so it eased the need for me to ‘educate’ them.
    Hope the next few weeks get easier. 
  • Julez1958
    Julez1958 Member Posts: 1,257
    Hi @LJS
    I too had lobular cancer after having a clear mammogram only 12 months prior - they call it the “ sneaky” cancer as it often  doesn’t  show up on mammograms.
    You have come to the  right place - everyone in this forum “ gets it” it a way people who haven’t had this diagnosis can’t. 
    There is also a wealth of info on the BCNA website .
    I found the emotional toll of the diagnosis as challenging as the physical toll - I saw a psychologist specialising  in cancer related distress for a couple of sessions and that helped.
    Also if you listen to the Dr Charlotte Tottman podcasts on here -  “What you don’t know until you do “ - they are very helpful - she is. Psychologist specialising  in cancer related distress who herself got breast cancer.
    Take care , avoid “ Dr Google” and feel free to post on here any time and you will find the advice and support a great asset.
  • LJS
    LJS Member Posts: 23
    I am wondering how much the universe thinks you can cope with. I lost my husband two years ago so am still struggling to adjust to that life change. I broke my foot badly at Christmas and am still recovering. Now this diagnosis. This year is just awful!
  • arpie
    arpie Member Posts: 8,172
    I am So sorry to hear of your loss, @LJS - I lost my husband to cancer just over 2 years ago too, so know how tough it is  :(    I am slowly getting 'less sad' ... but it is still not easy.

    Gosh, breaking your foot would have been horrible too - I hope you come good soon xx .... Yes - these things are surely sent to test us :( 

    You can do this, buddy  xx.  Chuck ANY question our way & we'll do our best to help you thru any speed humps - as we've 'been there, done that' already!

    Take care
  • Tri
    Tri Member Posts: 201
    Sending you virtual hugs @LJS
  • jennyss
    jennyss Member Posts: 2,081
    Dear @LJS,

    from jennyss in Western NSW