Newly diagnosed - private or public



  • Carissa_BCNA
    Carissa_BCNA Administrator, Staff, Member, Moderator Posts: 250
    edited May 2022
    Hi @NikkiJ6

    Here is a link to the Optimal Care Pathway, which goes through the optimal process from when diagnosed and throughout treatment. It will hopefully give you an idea about timelines. Feel free to refer to this document when meeting with your treating team. All the best for Tuesday.
  • NikkiJ6
    NikkiJ6 Member Posts: 11
    Thanks ladies,
    such very helpful info. I can’t seem to join any of the groups. Not sure why, I keep getting an error message.
    I had a call from my gp today who told me my cancer is triple negative, Invasive non specific type. She also said it was high grade. She said the report was more in depth than that and that it has also been sent to the specialist for tomorrows appointment. All of that means little to me. I guess I will learn more tomorrow. At the moment I feel like I have a sever case of butterflies in my stomach!
  • arpie
    arpie Member Posts: 7,451
    edited May 2022
    @NikkiJ6. All the best for your appt tomorrow... try and take a trusted buddy with you as extra ears and consider recording the meeting on your phone.

     @Mez_BCNA @Carissa_BCNA .. can you help Nikki join the groups please?  Maybe a Triple Neg group would be a good idea too? 

    Take care
  • Carissa_BCNA
    Carissa_BCNA Administrator, Staff, Member, Moderator Posts: 250
    edited May 2022
    Thanks @arpie

    @NikkiJ6 you may have seen my private message earlier about joining groups. Just let me know if I can help further. 
  • Cath62
    Cath62 Member Posts: 1,239
    Best wishes for your appointment @NikkiJ6.  Good to take someone to your appointment as there is much you will hear and sometimes it is hard to remember everything and process all the information. Thinking of you.
  • Lisa1407
    Lisa1407 Member Posts: 258
    Hi there @NikkiJ6, I thought it might be useful for you to hear about my public experience even though I am in Victoria. I do have private insurance, so I am a private patient in a public hospital. It doesn't really give me any privilege, other than allowing me to specify my doctors, but the hospital gets extra money this way. I have to say that being treated in a public hospital has been terrific most of the time - really good expertise, timely responses most of the time and I have not paid a cent except for medication. In terms of where you are at now, your initial surgery would need to be done within 3-4 weeks (as someone above has specified). However, the wait may come when it is time for reconstruction, unless you can have any reconstruction done at the same time as lumpectomy/mastectomy (this may not be possible for medical reasons). I waited about 18 months for my reconstruction. Good luck with your decision!
  • greyhound
    greyhound Member Posts: 13
    Hi nikki,
    I am in Melbourne and have no private insurance.
    I dropped my cover a few years ago.
    I have been extremely happy with the care I have received and it hasn't cost a cent.
    I am treated at Peter Mac, and I see a  consultant oncologist and breast surgeon
    The $50000 you talk of is nice to know you have.
    I'd definetly way up your options before using it for your treatment. 
    Best of luck xxx
  • arpie
    arpie Member Posts: 7,451
    Hi @NikkiJ6
    Great that things are moving along - all the best for your PET scan this arvo xx.  Terrific that you have such good support & love from your family & friends - they will be feeling quite bewildered, too.  Lean on them (and us) when you need that extra bit of support - and ask us ANY questions - no matter how small you think they may be - every question is important.  

    Have you been able to join the Young Women's group?  I hope the Mods will also consider starting a dedicated TNBC group, as it is such a specific treatment plan - and we have quite a few members who are TNBC who would probably join.  

    I'm with @greyhound re your $$ ..... try & hang on to it for your own use if you 'can' go public for everything .... keep it as your 'Special Treats Funds' along the way - to help you & the family thru the treatment.  I treated myself to a week's holiday at Norfolk Island after I finished my active treatment ... it was wonderful.  Has there been any mention of Radiology yet?  Maybe check with the Onc tomorrow?   But definitely ask for a quote re the surgery (if still thinking of going private), so there aren't any nasty surprises!!  I was expecting a gap of about $3-4000 (from the quote), but with 'other gaps' along the way & unexpected fees like my pathology - it almost doubled.  

    The genetic testing will probably cost you about $3-5,000 and usually you can't claim it from funds - but no harm in asking ..... it gives so much more information for your team to work with - and is usually well worth doing.  We had it done with hubby's cancer diagnosis last year.  Our hope is that eventually it will be the FIRST thing done re all cancer diagnoses for a more accurate assessment - not an optional extra for only those who can afford it xx 

    Were you thinking of reconstruction if you go with the mastectomy, or do you think you will go 'flat & fantastic'?  Sometimes, even going private with reconstruction, there can be big costs & if going public, can take some years before it can be done (totally unfair, as it should all be covered, I reckon!)  You can also join the Reconstruction group if you like, to ask them of their experiences. xx. Some put up before, during & after pics, so you'll have an idea of what to expect - but as you are having your chemo first, you don't have to make an urgent decision on that one. xx

    Take care xx

  • NikkiJ6
    NikkiJ6 Member Posts: 11
    Hi Arpie,
    I’ve been absent. My PET scan was good, had no signs of spread and I am still at stage 2 unless something changes when we get to surgery.
    I had my port installed last Wednesday then went directly to Icon for my first chemo session. It’s been a tough run of days since then. I had terrible headaches after the chemo up until last night when I was given some strong pain meds. Today I felt much better but it was my first day without steroids and I have been emotional. Hubby has a cold so is sleeping on the couch and I just feel sad and lonely. Not his fault he’s been a super hero and doing everything to make it easier on me but I feel strange and different.
    im sure it will settle into something more manageable but it all happened so fast and it feels like I’m looking at someone else’s life, not my own. Feeling sad that I’m not the same Mum to my 12 year old. 
    Sorry for the big whinge. Easier to share it here than with all the people who are trying to support me. 
    Thanks for listening ❤️

  • Julez1958
    Julez1958 Member Posts: 1,088
    Hi @NikkiJ6
    As many others have commented on here , the emotional /psychological impacts of a breast cancer diagnosis can be huge on top of the physical impacts.Crying , shock , anger, “ out of body “ feelings ( “ cancer - isn’t that fine thing that happens to someone else?”) are all perfectly normal.
    You can vent in here any time -we have all been there in one way or another.
    Take it one step at a time and take comfort in the fact we have a great medical system , the PET scan was good and you have a supportive hubby.
    You will get through this.
    I found listening to the podcasts by Dr Charlotte Tottman referred yo in the “ Announcements “above very helpful - she was a psychologist specialising in  cancer related distress who herself was diagnosed with breast cancer.
  • Pommy8
    Pommy8 Member Posts: 128
    In Perth can anyone recommend oncologist public and private please I'm North of the river.
    Started out a private but wanting to know if in the public system are you looked after.
    Thank you
  • Abbydog
    Abbydog Member Posts: 472
    I would agree with Cath62.
    See the Breast Surgeon privately, so that you can get started as quick as possible. 
    From my finding the lump to Mastectomy, was 10 days. I was happy with this. I just wanted it out.
    Getting specific details of your cancer and a plan of action.
    For some ladies here surgery does not come first, but after Chemo.
    I don't know how to get into Chemo Publicly, perhaps after surgery. But I'm sure it can be done.
    I was a Private patient(insured), but both my Breast Surgeon and Oncologist said I could have Radiotherapy as a Public Patient. This is what I did, and I was very happy with my care. They told me that Privately I would be out of pocket by thousands of dollars.
    Reconstruction could be done with your insurance money later, or sign up for Private insurance checking on cost and pre existing condition.  A friend of mine did this with her knee replacements. She found it cost effective, but you would need to check this for yourself.
    If you have Income insurance you may want to start that paperwork too.
    All the best with your treatments.

    Sorry I just noticed your first post was May 13, I expect a lot has happened since.
  • GenK
    GenK Member Posts: 65
    Re the payout, remember you may need support whilst undergoing treatment, even if only day surgery like my Nana was lucky to get away with, though my mother had surgery through public and onc is through public, though no reconstruction needed thankfully, but clearing the nodes has stopped her driving so she’s had extra costs for home support and pain meds not on PBS. Hopefully you get a smooth quick ride like my Nana, and my mother isn’t the heaviest need, but she’s needing funds for supports through treatment, not just Drs and hospital. Hth and good luck 
  • Hankster
    Hankster Member Posts: 86
    I was in the private system when first diagnosed and I have to say I still had lots of out of pocket expenses. I had to give up work and am now in public system. I had a recent recurrence and had radiation therapy with 2 weeks. I was very have with care I received publicly. I am in sa