Where do you start!!!

Heth7Heth7 Member Posts: 1
I was diagnosed 2 weeks ago, already have had partial mastectomy,  my results were described as confusingly good and bad, It's all such a mind overload at the moment. Have been advised to have full mastectomy which I guess is a no brainer, but  wow so much information so many decisions that affect everyone. I'm still stunned.


  • ZoffielZoffiel Regional VictoriaMember Posts: 2,049
    edited September 2017

    Hi @Heth7,

    It is really tough going in the first couple of weeks. I always recommend you get a folder that you can take to all your appointments--get copies of all your results, the names of your doctors and contact numbers. It's very easy to lose track of who is who and what they have told you.

    Things do get a little easier when you start to learn the language and figure out who everybody is and what they are talking about.

    I'm sure one of the ladies with better skills than I will pop up a link to the 'My Journey' resources, which may be helpful. If you haven't already connected with a breast care nurse, that is a really good idea too. They are a wealth of knowledge and can help you navigate.

    It's all one step forward, two back then hurry up and wait which can be both frustrating and confusing. This is a good place to ask questions when you need advice on specific things. We've all been where you are and know how ratty it can make you feel. Good luck. Marg

  • AfraserAfraser MelbourneMember Posts: 1,634

    Hi @Heth7. confusing wraps it up fairly neatly. As Marg says it will get clearer as you go, but now you need to think about more surgery, what you want to do after that (reconstruction or not) and what your medical advisers suggest re post operative treatment. It's all very variable depending on the precise circumstances of your diagnosis, as is your response to any treatment. I had a mastectomy nearly 5 years ago and, touch wood, hope I will get through my 5 year tests next month with no evidence of disease.

    Lots of people here can advise on a whole lot of aspects from their experience - there's precious few rights or wrongs - so feel free to ask, there's no such thing as a silly question. One of the things we will all suggest is stay off Dr Google - a really easy way to scare yourself stupid about something you haven't got and may never get!! Keep a folder as suggested, take someone with you to consultations if you can - it can all be a bit daunting and someone who isn't going through it can be helpful and more focused on getting in\formation that will help you. Many oncologists can give you material in writing on what will happen, what treatment you will have, possible side effects etc. Always remember these are indicative, most people only get some and some people get very few at all. Main thing is that the problem has been diagnosed, you are getting treatment and with luck and determination, you too can lick this. Best wishes.

  • adeanadean Member Posts: 1,033
    Im 5 years post so wanted you to see that you get past it. I will be honest its not easy good bad and better days but its doable. Adean xx
  • RomlaRomla AdelaideMember Posts: 1,472
    I'd start with the bcna "My Journey Kit" - it not only gives clear information about treatment it also provides  suggested questions to ask medicos each step along the way that I found useful when anxious and unable to think straight - it also has a lengthy listing of many resources available for advice/ guidance which you may not need initially in the whirl at the start. What I wished I had used was the diary to record appointments and their outcomes - it is such a Full on experience the first few months and keeping good records is a survival kit when you are drowning in detail and tired. Having someone to go with you to appointments helps a lot as it can be hard to remember when so much is being discussed.This site is full of quite amazing women who are willing to provide their knowledge and support if you but ask - never think there is a dumb question or that you are alone - someone is always here to talk to and who gets it.
  • Ann-MarieAnn-Marie Member Posts: 1,158
    Hi @Heth7 you can order the My Journey Kit here.
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