Ideas for podcast for those just diagnosed

Marianne_BCNAMarianne_BCNA Administrator Posts: 243
Hi all,
We are going to be running a podcast titled 'Just diagnosed what next' for those newly diagnosed. We would love your input into the questions you would have liked to have asked when first diagnosed - those questions you asked that gave you the most useful information and those questions you didn't even know that you needed to ask. 
Thanks!
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Comments

  • Annie CAnnie C Member Posts: 543
    From a remote (really remote) perspective, I would have liked information on accommodation options, who provides,  where, how and costs.

    In essense a 'go to' facilitator to organise this essential service right from the beginning at diagnosis.

    How to organise a second opinion. Where to go for a second opinion. Costs involved. For remote regional patients a second opinion is a must.

    What alternatives are available for treatment. Is treatment needed at this exact moment. Can I take a few weeks / months to research treatment options.

    Patient centred treatment. That is, what the patient wants. Put the patient at the centre of all decisions. 

    Can I meet the team involved in my care. Who will be involved in my care during treatment and post treatment. What will be my post treatment care. A written post treatment care plan is essential.

    Ask about the side effects of adjuvant hormone treatment especially in relation to comorbidities.

    Eighteen months down the track there are many things I would have approached  differently in my treatment if I had been 'armed' with appropriate knowledge. 










  • ArtferretArtferret MelbourneMember Posts: 210
    Does your surgeon work in both public and private hospitals?
    What is the best way to contact your surgeon, oncologist etc?
    And yes being told all the main side effects of the hormone therapy would have been handy rather than having to hunt them out myself.
    Also asking about what clinical trials are available that would be of benefit. 
  • kmakmkmakm MelbourneMember Posts: 7,188
    Yes, ask what is the preferred method of contact for your breast surgeon and oncologist. You will have more questions almost immediately after you leave their office...
  • SisterSister Adelaide Hills, SAMember Posts: 4,078
    So many women here (and myself) have been overwhelmed by there emotions during active treatment.  I think this needs to have a big emphasis.  Not just the shock of diagnosis but the rollercoaster that is the ongoing emotional upheaval.  Ways of coping.

    The other main one I'm thinking of is how to go about telling people.  Who should you tell?  Methods of getting the info out there.

    Ooooh...I just thought of another and it's disappeared from my brain (there's another again for you).  Oh, I know what it was - finances and accessing Super for Income Protection (or some policies may have a trauma component).
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,277
    I read my journal again yesterday and updated it. One of the most saving things was when I got a McGrath breast nurse. It all fell in to place from there.

  • Marianne_BCNAMarianne_BCNA Administrator Posts: 243
    Thanks everyone for your comments - these are so helpful not just for our podcasts but for those newly diagnosed coming onto the forum.
  • JoannieJoannie Member Posts: 7
    edited February 27
    Please consider making the future podcasts in video format also, so those with hearing impairment can be included, perhaps subtitles?  Perhaps a signer also?  
  • DearBDearB Member Posts: 205
    Mention that if you gp writes kindly bulk bill all scans are no out of pocket. ( well they were for me)  I was so grateful at the time he did it for the first one and then would do for all of the others. ( I have health insurance but remember feeling in such a daze we didn't even Use it and I don't regret that for one moment I have had the best of The best for surgery and even now with my thyoid I see the head of endocrine at royal Melb and don't pay a cent (except for parking)  the only one I wasn't going to get for free was the dexa scan that wasn't going to be covered for bc but was for graves. Woot. Go me how lucky 🍀. 
  • Jax1964Jax1964 Member Posts: 71
    The reality is not like the glossy brochures.
    You will most likely not see the same doctor twice.
    You will see a string of registrars and sometimes they will contradict one another.
    Every doctor will interpret your blood results differently.
    None of the young doctors will have developed any "bedside" manner so expect to be treated like a piece of meat.
    If you do manage to see the same doctor twice, they will not remember your name - they will look at your file and refer to you as your disease. "Ahh, you're the mastectomy case with the clear nodes."
    You will be ridiculed if you dare to look up something on the internet and ask your doctor to explain.
    You will wait for hours and hours for every appointment. You will be lucky to get 10 mins face to face with someone who will be more interested in reading your file than looking you in the eye.
    You will be booked in for procedures that you have no clue about. You will dutifully turn up, line up, shut up and check your dignity at the door.

  • AfraserAfraser MelbourneMember Posts: 2,297
    That's an awful litany of indifference (at best) @Jax1964 and I am really sorry if you have been through that. Mercifully I have an oncologist who seems to like questions, and apart from a couple of nurses with inappropriate manners, I have had a good experience. Many of us have had little or no experience of hospitals prior to bc, so some info on institutional procedure, who's who in the zoo, would help. Assertiveness is probably the best defence in the first few weeks, just about the hardest time to maintain it or learn it! 
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