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JodieA
JodieA Member Posts: 5
edited January 2020 in Newly diagnosed
Hi I was diagnosed onFriday after mammogram, ultrasound and core biopsy.  I have been told I have an invasive ductal carcinoma grade 1.  It is about 2cms at its largest and is located at 3 o’clock, the report says no lymph invasion. I am 45 years of age and have silicone implants for the last 10 years.  I have not yet seen a surgeon so have no idea what’s happening, I live in the south west of Perth.  I have been referred to a surgeon in Bunbury but am tossing up whether to go to Perth for surgery.  Please if anyone has any thoughts or suggestions I would love to hear them, thank you.
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  • iserbrown
    iserbrown Member Posts: 5,563
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    @JodieA

    Sorry to hear of your diagnosis.  Everything is a whirlwind initially however as appointments and treatments are offered and considered you will hopefully have a sense of control.
    Your comment about having implants is something for discussion with your medical team. I have an implant but that is as a result of breast cancer.
    This link is a previous discussion from someone in your area. Discussion within the post Bunbury is mentioned 
    Best wishes and take care 

    https://onlinenetwork.bcna.org.au/discussion/comment/182247#Comment_182247
  • arpie
    arpie Member Posts: 7,668
    edited January 2020
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    Hi @JodieA    So sorry to see you here ..... we have some wonderful WA members who will be able to guide you in your choice of hospital/services ..... as you are rural, you'll also be able to claim back some costs re fuel/airfare/accommodation via the WA Isolated Patients Scheme (not 100% sure of it's name.)

    I hope you'll find some comfort online here - we know exactly how you feel & what you are going thru as we've all been there, done that.  It is a roller coaster of emotions - from downright anger to tears, to being shit scared and everywhere between.  I hope you have supportive family & friends around you. 

    Maybe they suggested Bunbury so you'd be closer to family/friends?  But go with the best surgeon/facitlites!!

    Take care - all the best with your decision making.  I am rural NSW & instead of going local, decided to travel 3.5hrs to Sydney for my surgery (and stayed with my brother & SIL afterwards) and then went 1.5hrs north for my radiation treatment after surgery (I dodged the chemo bullet.)   In both cases, I was pleased I did.

    I'll 'tag' a couple of our WA members @Annie C   @JJ70   .... 

  • Annie C
    Annie C Member Posts: 850
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    @JodieA

    These early days of diagnosis are very difficult and confusing. I was diagnosed 2 years ago and needed to travel to Perth for diagnosis and treatment. I live in the Kimberley. It was one big mind fog.

    I had my surgery at one large Perth hospital. My followup up care is now at another large Perth hospital.

    You have the right to choose where you wish your treatment to be, even as a public patient. That said, should we ever leave our beloved Kimberley, Bunbury is the area we would choose to live in because of its health services and we have family in Margaret River.

    You will be eligible for WA Country Health PATS (Patient Assistance Travel Scheme) for transport and accomodation costs. It's not much, accomodation allowance per night is $60 for a single and $75 for a couple. You will need your GP to provide and sign the PATS application forms.

    If you decide to go to Perth, now that you are officially diagnosed you are eligible for accommodation at the WA Cancer Council's accomodation units. The cost at the Cancer Council's accomodation is fully covered by WA PATS. 

    WA Cancer Council 's accommodation venues are

    Crawford Lodge (Nedlands)  ph 9489 7333
    Milroy Lodge (Shenton Park)  ph 9382 9333
    Google accomodation in Perth - Cancer Council Western Australia.

    This is the practical information that I wish I had been given in the early days. 

    Take care. Feel free to PM me anytime.

    Warm Kimberley wishes to you for a successful outcome in your decisions and treatment. 

    Annie













  • kmakm
    kmakm Member Posts: 7,974
    edited January 2020
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    @Tamlyn @suburbangirl

    Hi Jodie,

    To give you a rough idea, what will happen next it'll be something like the following.

    Your GP will refer you to a breast surgeon (BS). You'll need to decide if you want to go public or private. You will meet your surgeon and discuss having a lumpectomy. You probably won't have a mastectomy unless there are extenuating circumstances. You'll have some pre-op checks and have the surgery sometime in the next few weeks. It's usually a one night stay in hospital or day surgery. If the surgeon doesn't get clear margins, you'll have to have a second operation. This happens in about 20% of cases.

    Once the tumour has been analysed, you'll go to see an oncologist. Your BS will refer you. The tumour size currently is an estimation. It is only truly known after it's been removed, and this may change your course of treatment. With no spread to nodes, you may proceed straight to radiation therapy. There may be a question of chemotherapy. If your tumour is 2cm or less, your option could be a type called TC, which is usually four infusions over three months. Another influencing factor is the Grade (1 to 3) of your cancer cells. Grade 3 (aggressive) can tip you towards chemo. You could also be offered a genomic test to see if chemo would be beneficial. These aren't covered by Medicare, and cost $3000 - $5000.

    If your cancer is estrogen and/or progesterone receptor positive (ER+ PR+), you will be prescribed Tamoxifen, or if you are post-menopausal, one of three drugs that are called aromatase inhibitors (AIs). Hormone receptor positive cancers use estrogen to grow. Tamoxifen stops the interaction, and AIs stop the production of estrogen. You wouldn't start taking them until your active treatment finishes.

    I hope this helps. You're going through the absolute worst bit now. Once your treatment plan is known and underway, the panic subsides and you won't feel so dreadful. It is a really steep learning curve, it's no wonder you're confused! However I promise it gets not easier, but more bearable somehow.

    This forum is a great place for info and advice, company, understanding and a laugh (truly!). No one wants to join this club, but there's some bloody good company here. Big hug, K xox
  • Tamlyn
    Tamlyn Member Posts: 7
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    Hi Jodi,

    I was diagnosed in November last year. I’m living in Busselton/ Dunsborough and doing treatment in Bunbury. My surgeons name is Dr Marcus Ong he is wonderful! So gentle and understanding. He is through the public system, if this is a path you want to take. Just ask your gp to refer you. I found relocating to Perth would be harder than doing treatment in Bunbury. I will be doing my chemo and radiation cycles in Bunbury. If you need any other information please let me know I would be happy to help. 

    Hang in there xx 
  • iserbrown
    iserbrown Member Posts: 5,563
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    Treatment plans are tailored to the individual.  
    Here's a link from the BCNA website which will give you an understanding of the type you have been diagnosed with
    https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

    Hope that helps 
    Take care 
  • JodieA
    JodieA Member Posts: 5
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    Thanks so much for your responses.  It certainly clarifies some things for me.  Tamlyn I have been referred to Marcus Ong.  I will call first thing tomorrow and see when I can get an appointment.  Just worried I will have to wait a while as I’m a public patient, cant stand the not knowing.  I was in a bit of shock and didn’t ask my gp what the following means on the pathology report - oestrogen positive 3+, progesterone positive 3+, c-erb-2 status negative, can anyone please help? Thank you. 
  • suburbangirl
    suburbangirl Member Posts: 123
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    Hi @JodieA,
    So sorry to see you here, but I hope you find the support, advice and 'online friendship and understanding' as amazing as I have!
    Once you get your treatment plan, it gives you some control back and something to focus on.
    Day by day you move forward until the day comes and you have finished 'active treatment.'
    I was diagnosed in February 2019, had two surgeries and radiotherapy, and am now on Arimidex (AI). I went private for surgery, as my surgeon works in both public and private sectors, and public for radiation, as private radiation is expensive with minimal health fund rebates.
    I cannot speak highly enough of my care, in both public and private.
    I live in Perth and if ever you would like to send me a private message, or have a chat, that would be great, and also for @Tamlyn
    Sending you my very best wishes,
    xx
  • jintie
    jintie Member Posts: 114
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    Sorry to see you here.  Being oestrogen and progesterone positive means that these hormones are feeding your tumour.  You mentioned that your tumour is grade 1 which means it’s slow growing (grade 3 means aggressive and fast growing and grade 2 is in between), invasive but no lymph node involvement means that it’s in the boob only.  You will most likely have more tests done which will be ordered by BS to ensure no nasties anywhere else and to guide what type of treatment needed.

    To give you an idea....

    I was 40 when diagnosed (2018), hormone positive (oestrogen and progesterone) but HER2 negative.  Tumour was 2.2cm, invasive, grade 3 and I had multicentric involvement (microcalcifications which had cancer) plus lymph node involvement. I had aggressive treatment with chemo and radiotherapy, then bilateral mastectomy with axillary clearance and now on hormone therapy.  I am currently NED (no evidence of disease).

    My mother has just recently been diagnosed.  Hormone positive, HER2 negative, invasive grade1-2 no lymph node involvement tumour is under 2cm.  Treatment is lumpectomy, radiotherapy and hormone therapy.  Of course this may change when they get results of senitial node biopsy (which is done at time of surgery to see if any lymph node involvement) - but ultrasound and MRI both show no lymph node involvement. 

    Good luck.  This online network is very supportive.


  • ddon
    ddon Member Posts: 349
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    Sending a warm and sympathetic hug. This is a crappy time and full of confusion and fear. Everyone gives such good advice - I have none to add except best wishes xxx
  • JodieA
    JodieA Member Posts: 5
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    Thank you everyone.  So great to have this forum to bounce off.  Jintie your mother's diagnosis sounds spot on to mine.  I hope you are both doing ok.  Thanks again.  Hopefully I will have some progress tomorrow.
  • JodieA
    JodieA Member Posts: 5
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    I saw a lovely surgeon yesterday and am booked in for a lumpectomy on Thursday.  She said one step at a time ... scans etc to be done today so busy couple of days. Thanks for all your support. 
  • JodieA
    JodieA Member Posts: 5
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    @suburbangirl - sorry I don’t have my laptop and can’t find your number but I went with one or the surgeons you recommended and loved her!! So thank you. 
  • suburbangirl
    suburbangirl Member Posts: 123
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    @JodieA- So thrilled for you and so great it can be booked quickly!
    Thinking of you for Thursday and keep us posted!
    Very best wishes, xx