Newly diagnosed over Christmas..

TiddenTidden Montrose Victoria Member Posts: 11
edited January 9 in Newly diagnosed
Hello to everyone going through this frightening journey. I am a 59 yo post menopausal woman who at this moment feels absolute terror. i had a routine mammogram and was recalled due to cancer being detected. Grade 2 established after core biopsies. I’m still coming to grips with the diagnosis, for some odd reason, I felt routine mammograms would have detected the cancer sooner.

 I am going through the public health system so have to wait up to four weeks to have surgery. The price to pay if you can’t afford private health insurance. I’m not complaining about the wait, I’m thankful our public health system is so accessible.

I have been to the Breast & Cancer clinic three times and not once has any health professional discussed the cost of radiotherapy or chemotherapy. I was under the impression that all the treatments would be covered by Medicare. Today, my friend informed me that post surgery treatment would cost thousands of dollars! I had no idea. I don’t have the finance to cover the costs involved and would appreciate input from anyone in the same financial crisis.

 Hoping to receive any advice.

Kind regards 

Tidden
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Comments

  • AfraserAfraser MelbourneMember Posts: 2,130
    Hi there

    Welcome, sorry you have to be here but you will find it a helpful and supportive place to be. I did have hospital insurance but I know many people have found the public sector to provide excellent support and services and I am sure they can advise and reassure you. I am equally sure that your wait for surgery will not be critical - but understandably difficult as you are both naturally apprehensive but wanting it over! Friends are very important at this time but it pays to treat "information"  - especially from people with no first hand experience - with caution. It's well intended mainly, but can cause concern unnecessarily. We've all felt that terror and disbelief at first, but it does help when you have a plan of action. Don't hesitate to ask questions - of your medical advisers most of all, but here as well. I am six years post diagnosis - one boob, no evidence of disease, living a normal and happy life. Keep your spirits up. Best wishes. 
  • TiddenTidden Montrose Victoria Member Posts: 11
    Hi Afraser, thank you for your message. Congratulations on your recovery and positive outlook. It is all very daunting at the moment, the “ not knowing “ is the worst because there is no action plan in place. Can you give me an indication to costs of chemo and radiotherapy?

    Thanks again,
    Tidden
  • kmakmkmakm MelbourneMember Posts: 6,449
    Hi @Tidden.

    You should be able to have chemo and radiotherapy in the public health system without paying a cent. If they try to charge you, query it. I'm not sure about the post-treatment costing thousands... Maybe if you went on a luxury cruise ship holiday?! If your cancer is estrogen receptor positive you will probably be prescribed daily medication for 5 - 10 years. The cost of that does add up over time but it's not prohibitive.

    I agree, the not knowing is the absolute pits. However that feeling passes, and you'd be surprised how quickly treatment becomes routine.

    There are many emotions along the way, surprisingly not all awful. None of us wanted to be here, but it is what it is eh?

    Try to stay in the moment as best you can. Take it day by day, hour by hour if you need to, and do your best to try not to cross the bridges until you come to them. We are very fortunate to have a world leading, well oiled breast cancer treatment system in Australia. You're in good hands.

    In the meantime, distract yourself as best you can. I watched a truck load of stupid sitcoms, meditated and did a lot of walking. Friends can be awesome for making us laugh, and laugh at ourselves too! Hobbies, work, family, whatever distracts you best.

    My mum had very aggressive breast cancer in 1986 and she's still alive and kicking at 84.

    Sending you a very big hug, K xox
  • AfraserAfraser MelbourneMember Posts: 2,130
    Many [email protected]! I'm being a bit of a night bird, which is unusual but there's often someone around for you to talk to @tidden, at all hours! I didn't have radiation, but my insurance excess for 6 months of chemo was about $200. Sometimes you are financially better off in the public system even if you have insurance! 🙂. Take care.
  • CarmelSCarmelS CanberraMember Posts: 238
    Tidden. Hi, I have had all treatment & multiple surgeries through public health & the only thing I paid was some of the chemo costs, but this was in 2011 & I’m pretty sure it has changed since then & either costs very little or nothing at all. Radiation in a public hospital cost me nothing. Follow up appointments with Medical & Radiation Oncologists & Surgeon have cost nothing. Unless someone has been through either public or private cancer treatment it’s hard to know what other people are paying for.
    Carmel
  • SisterSister Adelaide Hills, SAMember Posts: 3,653
    edited January 8
    Welcome @tidden - sorry to see you here but glad that you found us.  The waiting is hard but try to distract yourself if you can.  Once you have a plan to focus on, it should get easier.  That initial time post-diagnosis is a vortex of terror.  You can read my cancer diagnosis by clicking on my username.

    As far as costs, going through the public system, I doubt that you will have any...possibly, carparking?  I did have private insurance which I used for surgery and chemo but I know lots of people go public without a problem.  By the way, 4 weeks is not a huge time to wait.  I know some women have gone in for surgery within days of diagnosis but my surgeon doesn't wait around and I was diagnosed on 5/12 with surgery on 21/12 to get in before Christmas and that was probably as much because he knew that I was so anxious.  In between, I had a number of tests and scans to get done before surgery.

    Radiation is where the costs add up and private doesn't help you with that, anyway.  People can be thousands out of pocket but as you will be going public, there should be no cost at all...for the same treatment.  The only difference I've been able to ascertain between private and public rads is the supply of moisturiser and maybe your own gown (which you have to wash yourself, of course).

    Then, as @kmakm has said, if the cancer receptor type is positive, you will probably have ongoing treatment with some sort of hormone therapy.  This adds up over time as it could be for 5-10 years at around $40 per month.  Do your sums and check if you're eligible for a health concession card as this will bring it down to $5.40 per month.

    I have not had reconstruction (not sure if I'm going to) and you don't say what surgery you're going in for, but if you are considering it, check with your surgeon to find out what the waiting lists are like if you don't make the choice immediately.  I believe that in some states (Qld for sure), the waiting lists are years long in the public system unless the reconstruction is part of the original surgery.  Other members may shed more light on this.

    If you're working, it may also be worth checking your Superannuation cover as you may have Trauma cover or Income Protection.  Time away from work may be minimal but good to know that if you must take extended leave, whether you can access some money and the restrictions around it.

    You will know more about what your treatment will be when you get the pathology report back after surgery.  Don't be afraid to ask your medical team about costs at any time during the process and tell them if money is an issue for you.

    And check in with the forum at any time with questions, rants (or head over to Night Howls if you just want to pass the time of night (or day)).
  • jennyssjennyss Western NSWMember Posts: 452
    Dear @Tidden, I too was treated in the public health system for chemo and radiotherapy, after surgery in a private hospital. I had no costs. and was even able to access Isolated Patients Travel  Accommodation Assistance Scheme (IPTAAS) to help cover costs for accommodation when I had to travel for radiotherapy. Can Assist have branches in rural, regional and metropolitan areas, and may be able to help with  petrol or food vouchers if things get really tight, which they did for me!

  • Blossom1961Blossom1961 Geelong, VicMember Posts: 680
    Hi @Tidden I had my full treatment through the public system. The wait time prior to treatment is only as long as what is safe so the doctors must feel confident that your BC is not overly aggressive. I had to pay for my first mammogram and ultrasound as I found the lump between scheduled mammograms. Then I had to pay for the clips (this is not an automatic procedure) as the mammogram centre were being thingy. After that my only costs were parking and script medication for heartburn, nausea and vertigo (you may not need these either). I had chemo and surgery. I did not have radio or recon but these were offered to me at no cost.
  • iserbrowniserbrown Regional VictoriaMember Posts: 3,258
    @Tidden ;

    Deep breaths!  You have found the forum that will be able to answer or guide you along the best way we can! 

    Unless you are in it you have no concept of what it is all about and your friends and or acquaintances may mean well by passing on what they think is correct, but more than likely misinformation, but please be guided by the clinic you are at and the medical team that will be looking after you. 

    As to out of pocket, that varies as others have said.  You may not even be having chemo and or radio, all dependent on pathology results and evaluation by your team.

    Great advice thus far!

    Here's a link to the BCNA website - some excellent reading - but please be mindful until such time as you know your type and treatment it can be overwhelming

    https://www.bcna.org.au/understanding-breast-cancer/new-diagnosis/getting-through-the-first-few-weeks/

    Take care and ask away
  • arpiearpie Mid North Coast, NSWMember Posts: 2,270
    @Tidden - feeling for you right now - I had my diagnosis this time last year ..... I had my surgery private & am about $6000 out of pocket with various gaps (in hindsight, prob should have gone public!) 

    My rads was public & absolutely free, and I had access to very cheap accommodation for the rads (as it is every day except weekends for a number of weeks) and had travelled to Port Macquarie to have it.  They have Rotary Lodge attached to the Hospital for 'out of town patients that is subsidised by IPTASS.)

    What area do you live in (city or town?)  We may have members there who can give you tips on local resources.

    As the girls have said - lots of deep breaths - take one day at a time - keep yourself really active & the time will fly by. 

    Try not to overthink it - don't use Dr Google as it will only confuse you, as every person is different, with different procedures and outcomes ...... Your team will be setting you up for the best treatment possible - have faith in them.

    All the best,  take care xxx

  • kezmusckezmusc Member Posts: 1,016
    Hi @Tidden,

    Welcome to the forum. Always brilliant advice and support on here not matter the time of day or night.

       I used public system as well.  Surgery in the public hospital and chemo and rads were done public in a lovely fairly new private hospital.  They even had free parking!  So all up costs were just the initial mammogram, u/sound and MRI....everything else after that was free.

     The ladies have pretty much covered everything already.  Keep busy lovely, the beginning is the pitts we all remember how overwhelming it is.

    Keep in touch
    xoxoxoxo
  • steplightlysteplightly Gold CoastMember Posts: 185
    Hi @Tidden  I was diagnosed through Breastscreen in 2017 and I went through the public system and have paid nothing for any treatment or any follow up screening, nor car parking for radiation as they gave me a sticker for the car for the whole time of treatment. All the best in waiting time which can be a mental challenge. This site is great for support and info. Sorry you are here with us. Take it a step at a time Hugs 
  • kitkatbkitkatb Member Posts: 293
    Hi @Tidden,    Sorry about your diagnosis and the waiting is just the pits but after saying that 4 weeks is about the amount of time I had to wait as well. I went through the public system and didn't pay for anything at all except car parking a a few prescriptions.  Once you have a plan with your team you will find it a lot easier to move forward.  Big hugs to you and you will find this forum a great place to ask questions and have a good rant and rave or a few laughs along the way. xox

  • TiddenTidden Montrose Victoria Member Posts: 11
    Hi kitkatb, thank you for your kind words, I had no idea what a supportive network this would be. I actually received my admission date this morning; 31st Jan, so not too long a wait. Waiting for results will be traumatic, I’m hoping my lymph nodes are clear.... but that’s getting ahead of myself. Everyone says take one day at a time, so that’s the plan. I’m thankful for the public health system, without it, like many others, would be lost without it.

    Take care
    Tidden💗
  • TiddenTidden Montrose Victoria Member Posts: 11
    Thank you all for your overwhelming support and comments. I’m feeling so much better and positive already. I understand it’s a hard journey for us all, and some a longer journey. Good luck and warm wishes to you all.

    So appreciative 
    Tidden💗
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