The waiting game...

Gemini78
Gemini78 Member Posts: 12
Hi everyone, 

I'm currently on a bit of a waiting game so thought I'd introduce myself as I'm new to this club that none of us wanted to be a part of! 

I was diagnosed with "locally advanced multicentric left breast carcinoma" on my 46th birthday a couple of weeks ago. It was quite a shock as I'm super healthy and have zero cancer in my family!

I was diagnosed after me noticing a lump and strange dimpling, plus feeling discomfort. I was convinced it was a cyst that needed draining as it felt (and still feels) like I did when I was breastfeeding and parts of my boobs would fill up with milk! My GP referred me for a mammogram and ultrasound plus I also had two biopsies - one core needle, one fine needle - in to different locations of concern. 

I'm going through Flinders Public here in Adelaide. Have meet with the surgeon for my initial appointment then at her request this last week I've had a bone scan, CT scan and MRI scan, plus a blood test. 

And now I wait for my follow up with the surgeon for all the results and plan of attack on 1 July. The waiting is definitely the worst bit! (and to top it off, I've caught a horrid flu type lurgy off my kids so am totally down in the dumps!)

What I know so far (everyone seems to speak in such technical terms here - I guess we become pros in our own experiences!) is it's grade 2 and Invasive Ductal Carcinoma. It's also a Hormone Receptor Status type of breast cancer. 

Just here to say hello really but also keen to discover other women at a similar stage to me, or anyone who's been through Flinders Public. Always just nice to know I'm not alone! 

x
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Comments

  • arpie
    arpie Member Posts: 8,198
    Welcome to the group, @Gemini78. .... so sorry to see you join our select little group xx. It is a whirlwind of emotions & a bit of a treadmill to start off with ... go here, do this, go there, do that .... but it is all collecting information for the best plan of attack, in your case.   I hope you recover from your flu fully, so that it doesn't impede your progress.  

    Yes, the waiting definitely sucks.  All the best with your appointment on July 1.  Consider taking a trusted friend/relative with you, as both physical and emotional back up .... and an extra set of ears!!   Also consider recording all your early meetings, as it is easy to miss bits, as you ponder (or write down) something they'd just mentioned!  

    I didn't go thru Flinders Public, but one other member was very happy with their treatment there .... and I can only imagine you'll get the best treatment too.  I went private for my surgery (coming off the Xmas holidays, I wanted it done 'then & there') and then went public for Oncology radiation & medical oncology for tablets.  I have nothing but praise for everyone I've had treatments with. 

    Jump onto this thread, to read up on what to take to hospital, maybe cook up some meals & freeze them now, so that you have them 'ready to go' when you come home ..... also there is a lot of 'off topic' threads you may like to check out too - re pets, gardens, art & craft, even cooking & 'funnies' ... as we all need a giggle at some stage or another!! 
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

    Take care and all the best.

    Try & keep as busy as you can in between appointments (I went fishing virtually every day, to help pass the time! It is my 'safe spot'!)
  • iserbrown
    iserbrown Member Posts: 5,764
    https://www.bcna.org.au/resource-hub/articles/types-of-breast-cancer/

    @Gemini78

    The link above explains different types of breast cancer.  Hopefully it will give you an insight! 
    Yes we learn terminology that we never heard of nor needed previously!
    Once you have a treatment plan a little bit of control comes into it.
    Take care
    Best wishes 
  • Alfie
    Alfie Member Posts: 31
    Hi Gemini78
    I have stage 2 ductal invasive carcinoma also.

    Had my surgery nearly 2 weeks ago.

    I had it at Flinders private but the bonescan and radioactive injection was done at FMC.

    Mine was picked up by breastscreen SA where I also noticed dimpling and a lump. So took myself off to the dr. Core biopsy followed by a call from my gp with results.

    Yes the waiting is the hardest and being sick on top you poor love.

    Agree I have been cooking meals to pop in the freezer. Also I have sucked it up and if anyone asks to help I say yes. I.e. a friend came round and helped finish our garden pruning. Another dropped in soup and another helped me get drunk and cry.

    I had a list of questions for the surgeon but found the time wasn't right to ask.

    All our stories are so different but, we are strong supportive women, we can deal with this. But it is also scary... the not knowing... big hug.

    Please let me know how you go tomorrow.
  • Gemini78
    Gemini78 Member Posts: 12
    Thanks everyone.

    Quick update from today. I'm booked to have a mastectomy on Tuesday 9 July. This will be followed by 4-6 months of chemotherapy. 

    Mixed emotions but mostly I'm just pleased to have a plan to focus on now. 
  • byo_boy
    byo_boy Member Posts: 39
    edited July 1
    @Gemini78 glad to hear that you have a plan now - it must really help to clarify things. Unfortunately we're still in that waiting stage, with our first PET scan tomorrow which we're praying will be clear.

    Please keep us updated with your journey, it sounds like we're about to travel a similar path.

    Stay safe.

    George
  • Gemini78
    Gemini78 Member Posts: 12
    Will do @byo_boy - the wait really was so hard and there's so much info that bombards you in those first few weeks. But I assure you the time will come when you have a plan just like I got today. x
  • Alfie
    Alfie Member Posts: 31
    Hi Gemini
    I am now in a similar boat.
    Saw oncologist yesterday.

    I have the rest of my lymph nodes out on Monday. If more nodes found to have cancer cells , then scans.

    On the 29th of July I start 5 months chemo.
    A break then radiotherapy. Then hormone tablets.

    I am lying here thinking have I done the right thing saying yes. I think it's just fear of the unknown. I always said I would never have chemo. It's so different when you are affected by this hideous disease.

    Anyway I am usually pretty positive. My calm place is the sea, even though it's cold at porties. It's my happy place. I was back in as soon as I could after surgery plus swimming is the best for moving arms. Plus my head.

    @boy boy good luck with results. I saw a previous post of yours about exercise,totally agree so much research into exercise when going on this journey.

    Funny I asked my hubby how will he be looking at me if I lose my hair. Well he doesn't have much anyway, boy did we laugh. Mind you I will go for the shaved look and rock those hats.

    Might try and close my eyes before our cocker spaniel bounds in.
    Take care guys...









  • Gemini78
    Gemini78 Member Posts: 12
    @Alfie Ohhhh Porties! No better place to heal the soul - and the body! You’ve inspired me! Must be sooo cold in there at the moment but I can imagine it’s incredible. 

    Sounds like we might end up as chemo buddies.

    What a ride. X 
  • Julez1958
    Julez1958 Member Posts: 1,267
    Hi @Gemini78
    I am a Gemini 58 ( aged 66)
    anyway , waiting is something we all need to get used to with this disease - waiting  for  
    appointments, waiting for scans, waiting for scan  results, waiting for treatment to be over , etc etc.
    I did a mindfulness course years ago and had “ lapsed” and found myself taking it up again - whatever works for you works - rest assured you can seek any advice / vent on this forum- we have all “ been there “ one way or another 😎
  • Alfie
    Alfie Member Posts: 31
    Hi @Gemini78

    Gosh do we have to keep putting in our profile name..

    You must be a mid coaster..and local to know porties as that and not Port Noarlunga.

    Yes water is cool but I have been a swimmer for years and love it. Most people down there know me.

    You should do it, never regret it and let's face it you won't be thinking of everything else.

    Yes looks like we will be buddies, I am a bit older at 65 but not at heart... We are all going to go through this differently.

    Hope you feel better.
  • Gemini78
    Gemini78 Member Posts: 12
    @Alfie I'm a bit inland - just beyond McLaren Vale. But yes, I know Porties well! 

    Agree about cold sea swimming. I've dunked myself in the winter sea before but never made it a regular thing. Maybe I should! 
  • Gemini78
    Gemini78 Member Posts: 12
    Julez1958 said:
    Hi @Gemini78
    I am a Gemini 58 ( aged 66)
    anyway , waiting is something we all need to get used to with this disease - waiting  for  
    appointments, waiting for scans, waiting for scan  results, waiting for treatment to be over , etc etc.
    I did a mindfulness course years ago and had “ lapsed” and found myself taking it up again - whatever works for you works - rest assured you can seek any advice / vent on this forum- we have all “ been there “ one way or another 😎
    Haha Gemini58! Brilliant! You raise a good point about mindfulness. I think practicing being in the here and now might be a good skill to get on top of. Thank you for the reminder. 
  • jennyss
    jennyss Member Posts: 2,083
    Dear @Gemini78,

    from jennyss in Western NSW (but a South Australian in exile)
  • JenD
    JenD Member Posts: 25
    edited July 3
    Hi,  I was given a positive IDC grade 3 with lymphnode involvement on 22/12/23 (after needle byopsy).   I was referred by dr to flinders public.  I live close to fmc so was happy with that.  I had surgery (lumpectomy) in late february, after many scans and anxious waiting for results.   I am now half way through chemo (with radiotherapy and hormone blockers to come).  I am more than happy with the care through the breast clinic, and cancer centre.  My surgery I was overflowed to private (as a public patient), and the multidisciplinary approach at fmc is brilliant.  I felt very comfortable with the surgery team.  Now,  each week while in chemo I get a coutesy check from the mcgrath breast nurse, and often also the outreach nurse.   I attended the look good feel good workshop in june which was a good workshop on site, and have started a 12 week gym  program (1 day a week for me to keep it achievable) through the physio/lymphodema clinic/allied health. 

    I have private health, but have not needed to use it on any of the breast cancer care received this year (crazy, but I feel my care would not be improved anywhere else!).   
  • Alfie
    Alfie Member Posts: 31
    Well Gemini
    Back in the sea today. Boy is it cold but I know after Monday it will be a while till I am back in. It is very good for our arms. My surgeon is a swimmer so understands and wants be back in as soon as possible as does my oncologist. It must be cold where you are and a beautiful place. I used to do art at Blewitt Springs.

    JenD your care sounds great. 

    Gemini I may not be on here a lot as at the moment I find it all a bit scary. I am positive but step by step. Tomorrow dental check then echocardiogram in the afternoon. Friday off out with hubby as Monday is my second lot of surgery as they found ca in my lymph nodes..little poops.

    Good luck on Tuesday. I have to go to Ashford for this next surgery due to theatre space. In for 2 days.

    Keep in touch.