Can not believe it.

Denhamia
Denhamia Member Posts: 9
edited September 17 in Newly diagnosed
Shock, denial, anger - cant imagine how I can move towards acceptance.
Newly Dx. Initially was stage 2, then told stage 3 and now looking at stage 4 with lung mets. What the! This roller coaster is insane and I want to get off.
Found a lump 8 weeks ago, took a month to get into my rural GP, another 2 week wait for scans and a further possible month wait after this for biopsy (apparently). So instead spent a fortune flying myself to Sydney to the one stop shop at Sydney Breast clinic (they were amazing) scans, biopsies, pathology all on the same day with lovely nurses, surgeons and Breast GPs to consult with as well. Got the bad news of lymph node involvement that day (what a horrible trip home finding trains and sitting in the airport alone with this news).
4 days later with core biopsy results apparently better news of - Gd 1 slow growing highly hormone receptive and HER 2-ve Ca. Staging scans the next week, another week to get into the breast surgeon. Feeling good and starting to get my head around Mastectomy and some Hormone therapy and maybe some radiotherapy.
Then the bad starts flowing again not stage 2 now looking at stage 3 with potential Mets in lungs - What!. So Surreal when one is so fit and healthy. Now another 2 weeks wait and long distance travel to have more invasive investigations to confirm or discount this scary stage 4 Dx. On top of this had to go cold turkey off my HRT so everything aches, I cant sleep, I cant breath and the emotions are all over the shop and the anxiety is making this all 10x worse.  Meanwhile I am trying to continue work and family life as normal!?
So unfair when I have finally got to a place in my life, happy in my newly set up little business, kids almost off doing there own thing and life was finally looking like I could start having some me time. I did everything right - regular and recent mammograms and health checks all good, but somehow this little nasty thing just some how snuck under the radar. Well damn! Deb
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Comments

  • iserbrown
    iserbrown Member Posts: 5,710
    Deb!
    Your heading describes most, along the lines of what the!  It's certainly a shock!
    Good on you for making the trip to Sydney to a dedicated facility.
    Once you have a complete diagnosis then it's time to concentrate on the treatment plan.
    The BCNA website will offer you a plethora of information and podcasts.

    In the meantime maybe consider ringing BCNA Helpline, link below

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

    Best wishes 
    Take care

  • Locksley
    Locksley Member Posts: 969
    Deb I am so sorry to read your news. 
    Take a deep breath.   That is so brave and courageous of you to go interstate to get the ball rolling instead of waiting longer for rural treatment.  Good on you for doing whats best for you.  I am sorry you are on your own while you have appointments and get results.  Cancer council can put you in touch with a counsellor if you need to reach out.  Have they put you in touch with a breast cancer nurse.   Sending you my thoughts and prayers. 
  • Tri
    Tri Member Posts: 146
    @Denhamia sending you virtual hugs- what a lot you’re processing and grappling with. 
    The unfolding diagnosis sounds incredibly tough. 
    I was triple positive ie HER2 positive, oestrogen and progesterone positive and finished my treatment, surgery and radiation therapy in April. If it helps, I am happy to answer questions/expand on my experience with the HER2 positive treatment . 
  • Tri
    Tri Member Posts: 146
  • Tri
    Tri Member Posts: 146
    That’s great to hear and a wise approach @Denhamia 🌻
  • arpie
    arpie Member Posts: 8,056
    All the best for your biopsies this week @Denhamia xx. 

    As you do have to travel for some of your treatment, consider joining the Rural & Regional Private group as we have lots of info there for fellow 'travellers'.   Your GP will have to sign off the original IPTAAS Document (re specialists that you see - a different form is needed for each one that you have to travel to see.) Then there is the 'travel diary' that I get the Specialist's receptionist to sign off as well (several trips can be made on the one page, so that you can claim all of them at once.)  There is a 12 month timeframe to make the claim in.

    You are covered for both fuel and a percentage of accommodation, if you need it, for travel that is at least 100k away .... or if you run up 200k in short trips over a week.  (If you stay with family or friends, there is also a $20 co-payment/day.)
    https://onlinenetwork.bcna.org.au/group/28-living-in-regional-rural-and-remote-areas

    Also check out this post that has a lot of info on the forum - and some other areas you may like to take part of .... you can show off your art & craft, garden, furkids and other bits ... also info on going to hospitals & how to 'self monitor' yourself with ticksheets on how you are going xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

    I hope you have good support from family & friends .... lean on them, and if they offer assistance/help - let them help you xx It can be anything from mowing your lawn, to pickup the kids from school .... Make sure you have someone with you at your appointments for physical and mental support - and consider recording your meetings, as it is very difficult to remember everything that is said at the time. xx

    Keep busy doing what you love doing .... maybe cook up some meals & freeze them, so that on days you don't feel like cooking - you have something 'ready to go'!  (Specially for after any surgery, too.)

    take care, sending big hugs xx

    Here is some info on Patient Travel Schemes for all states (accurate as of 2023) - check out the NSW column .... 
    https://www.ruralhealth.org.au/sites/default/files/publications/pats-fact-sheet-and-guide-2023.pdf
  • LJS
    LJS Member Posts: 23
    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.
  • Blossom1961
    Blossom1961 Member Posts: 2,469
    @Mez_BCNA Please move LJS to her own page so that people can see she is a newbie. Thank you. @LJS People will come online and help out. The diagnosis is hard to accept. Once you have a plan going forward it helps. People telling you to be strong doesn't help. It isn't happening to them! Go for a drive to the middle of nowhere and scream. Loud and long. Getting that out relieves some of the pressure. I just went out into the middle of my suburban street and screamed. We live in such a "caring" society that no-one did a thing about it and they didn't know I had just been diagnosed. Just as well I wasn't being attacked by someone. My diagnosis came nine months after a mammogram all clear and like you, I was healthy. Sending a huge virtual hug.
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,095
    @LJS I have created a dedicated discussion for you, please find via the link https://onlinenetwork.bcna.org.au/discussion/26689/invasive-lobular-carcinoma-diagnosis#latest
  • WhiteLight
    WhiteLight Member Posts: 38
    Hi @Denhamia,

    So sorry to hear of your diagnosis and the medical tests you have had to endure so far. You sound like a strong woman who is going to knock this BC on the head and do all you can to keep it at bay. 

    Take each day as it comes and allow yourself to rest and have a good cry when you need to, let family take over the day to day as much as you can. I am sending you virtual hugs and so many best wishes for you treatment ahead. 

    Hugs xxx
  • arpie
    arpie Member Posts: 8,056
    Hoping you have some answers today after seeing your Onc @Denhamia xx.  Great that you are being thoroughly investigated xx 

    Take care, we're all thinking of you as you go thru the steps to a treatment plan xx