Newly diagnosed over Christmas..

2

Comments

  • Shellshocked2018_
    Shellshocked2018_ Member Posts: 283
    Hi Tidden, sorry to see you here ,welcome to this forum of very informative people.
    I was recently diagnosed in late October 2018, had a partial mastectomy and sentinel node biopsy on December 19th. 
    I was like you, why do I have to wait so long for surgery ( I am also in the public sector).
    I asked my surgeon that very question, he replied if I thought you urgently needed the operation sooner it would have been booked sooner.
    Try not to worry and overthink things, one day at a time, I’m only just ahead of you, like all these beautiful people we know how you’re feeling. 
    I haven’t yet been out of pocket for expenses, and after talking to other people that have been through the public system in the last 12 months, I’m not expecting any. Not sure about the hormonal drugs that you take for years after though, as I won’t be taking those as my cancer is a triple negative.
    Take deep breaths one day at a time.I did a short course on meditation and mindfulness which was a great help to me , especially with my anxiety which was through the roof. We are so well aware of what the unknown does to you and how it makes you feel, just remember you’re not alone we are always hear to listen.
    Try and keep busy, I threw myself into housework, gardening, do something that you love doing.
    This forum is great to ask any questions that you may have and someone will respond.
    Do you have a breast care nurse you can talk to?
    Have you been offered any counselling?
    Everyone says that it gets easier once you know things and have a plan.
    I will be getting my plan tomorrow since having surgery.
    Any questions just ask away we are all here for each other.

    Sending big hugs your way ❤️


  • Zoffiel
    Zoffiel Member Posts: 3,374
    Hi @tidden I thought I might add a bit to this thread for the information of any newbies who might not live in, or close to, a major centre.

    Chemotherapy is free as you are admitted to the hospital on the day. What is not free are the discharge medications.  Depending on what they are--steroids, analgesics, antiemetics etc-- there can be some expense there. A word if warning about discharge meds , don't be tempted to get those scripts filled at the hospital pharmacy. Public hospitals, by law, have to charge the full PBS price (or concession price) and that can be considerably more than what you will pay at a wholesale/discount pharmacy. I'm talking about $10 per script for some drugs. Shop around.

    Another significant cost for rural people can be specialist fees. Not all hospitals have public oncology clinics and if they don't you have to pay to see a private oncologist. Here in North East Victoria that is a very expensive exercise. Rural folk need to ask where the nearest public service is and consider whether it is a better option to travel. You are not always informed of those options, particularly in areas where there is what amounts to cartel behaviour by specialist groups. Asking questions saved me thousands of dollars in oncologist fees for little inconvenience.

    Follow up scans can also be expensive if you need/want MRI or PET or bone scans for example. Cross that bridge when you come to it, but be mindful that once your cancer has been confirmed you no longer qualify for the Medicare rebate for some diagnostic procedures. Which sucks.

    Good luck and try not to stress too much about the wait for surgery, a couple of weeks won't make a huge difference. That said, by the time my double mastectomy surgery date came around (I had to have chemo first) I was ready to chew those puppies off myself, so the extra time can give you some space to get your head around things. Mxx
  • Sister
    Sister Member Posts: 4,961
    Good points @zoffiel.  I had forgotten about the hospital pharmacy costs and those of us who have access to metro services have no real idea of the difficulties faced by those in regional areas.
  • primek
    primek Member Posts: 5,392
    I went public and only paid for my oral medications. Everything else was covered by medicare. Ask questions of oncologist and breast care nurse about costs to be sure. 
  • Tidden
    Tidden Member Posts: 9
    Thank you all for your support, I am truly amazed by the friendly helpful responses from so many wonderfully strong women. I guess you don’t realize how many women go through this horrid journey until it happens to you. I tried to get support from the Breast councillor at the public hospital I will be treated at, apparently she is on holidays till February. I contacted Beyond Blue and spoke to lady who said breast cancer wasn’t really her area, and to keep busy...Where does one go to get support for anxiety and depression that has worsened since being diagnosed?
  • Sarnicad
    Sarnicad Member Posts: 318
    @tidden try either bcna they have nurses who if they can’t help will be able to direct you to the correct resources or the cancer council number I believe they would be either able to help or direct you to help
  • Tidden
    Tidden Member Posts: 9
    Thank you Sarnicad, will do just that.
  • kmakm
    kmakm Member Posts: 7,974
    edited January 2019
    @Tidden You're not too far from me so I can point you towards Eastern Health's Breast Cancer Centre. It's connected to Maroondah Hospital and is a shiny new facility which houses, amongst other things, an almost free community funded psychologist who specialises in breast cancer. Give them a call.

    One in eight women. There are so many of us.

    Big hug, K xox
  • Tidden
    Tidden Member Posts: 9
    Kmakm, that’s where I will be having my surgery and treatment, booked for the 31st Jan. The psychologist is on holidays till February, I rang today...
    There is so many of us and it’s frightening.
    Take Care, I read your profile and don’t know how you cope with so much going on. You must be one hell of a woman! 
    Stay strong
    Tidden🌸
  • kmakm
    kmakm Member Posts: 7,974
    I don't know about that but thank you @Tidden!

    I hope the care you receive there is good. Were you diagnosed through BreastScreen? K xox
  • Tidden
    Tidden Member Posts: 9
    Yes kmakm, routine mammogram, no lump present, so came as quite a surprise. I had some core biopsies done but still don’t know what type of cancer it is.
    Tidden🌸
  • Shellshocked2018_
    Shellshocked2018_ Member Posts: 283
    Hi Tidden, have you tried speaking with your GP, they may be able to prescribe you something to help,you sleep at nights, or help you find someone for counselling. If you are anything like me I seem to deal with anything better after a good night sleep.
    i did a short meditation and mindfulness course which helped me immensely for anxiety, as mine was through the roof in the early stages of diagnosis.
    I was like you Tidden BC found at a routine mammogram, no lump felt by me or doctors.
    Do you have access to a McGrath Foundation Breast Cancer Nurse?

    Sending hugs xx
  • Sister
    Sister Member Posts: 4,961
    You'll find out more about you cancer (sounds like an unwelcome pet, doesn't it?) once you've had surgery and the pathology report comes back.  It will show receptor  (positive or negative) as well as type of cancer and other details.  It's not always exactly the same as the biopsy indicates so the doctors tend to hold off with too much info until then.  

    I was the same as you - nothing to indicate cancer - just a routine screening mammo but, although life has been turned upside down since, my situation if it hadn't been discovered, doesn't bear thinking about.
  • kmakm
    kmakm Member Posts: 7,974
    @Tidden Yes I was diagnosed via a routine mammogram too. Lump was too deep for anyone to feel. Thank goodness I went for that mammogram. My situation would have been so much worse by the time the cancer made itself known. Did you have a nice doctor give you your diagnosis? It can be a bit of a lottery at Breastscreen. K xox