Forum Discussion

Sunshine7's avatar
Sunshine7
Member
6 years ago

Help re: Questions Please

Hi Everyone 

Newly diagnosed last week with Stage 1 DCI rht breast only at this stage. I found a lump last year and FNA & core biopsies both came back clear. I wanted it removed so had an excision done 1 1/2 weeks ago and went in for postop wound check this week to be told I have BC. I was in my lunch break & I think in shock and dont remember all the surgeon said only that I have surgery booked again 30/7 as shes away for two weeks to go back in and try clear margins and do a sentinel node biopsy also. Ive booked into see my GP monday and will take my path results but just wondering what I need to do next re future tx etc Specialist said Id hopefully only need Rads & hormone blocker but do I organise this? Also with the my journey online tool & bc nurse is this something I ask my GP about? Thanks for any help offered just feeling a bit overwhelmed & I like to be prepared as much as I can so any useful questions I should be asking would be greatly appreciated. Thank you x
  • Sunshine7's avatar
    Sunshine7
    Member
    6 years ago
    arpie said:
    So sorry to see you here, @Sunshine7, but you are in the best place here, to ask away on any question and you’ll get honest answers from those who’ve gone before you.  Hopefully you’ll have a smoother road of it from now on xx

    As @iserbrown said, deep breaths, take one day at a time ... if you are able, keep yourself busy doing things you love doing, to stop your brain going into overdrive.  Stay away from Dr Google ... so much of the info is old hat and everyone’s condition is different.

    I am about 2hrs up the coast from you, but more than happy to catch up with you when you are up to it xx. I am currently enjoying a week in Darwin with another ‘breastie’  from WA, the lovely @"Annie C"

    Is your treatment at John Hunter?  I went to Sydney for my surgery in 1/18, then had my Rads at Port Macquarie (as they weren’t available near me.)

    yes, your Medical Team will arrange all you initial appointments, tho your GP will  need to give you long term referrals to all your specialists as from memory, the original referrals only last 3 months.

    I’ve got a box now for all my ‘stuff’ ....  Do you have some one to go to your meetings?  A spare pair of ears can help.  I also recorded all my meetings with the Specialist, Rad Onc and Onc in case I want to go over what was discussed, as you are pelted with so much info, it can be difficult to ‘hear it all’.

    take care, and all the best xxx

    @arpie thanks so much that’s very kind of you 😊 when my dr said let’s get you back in for surg tomorrow after I received results from lumpectomy I thought gosh no I need time to get my head around this I now see what she meant about being in peoples heads & some like to do straight away 😂  had a bad day today everything just kept breaking, tv coffee machine & I just kept crying but sitting having a cup of tea now thinking I can do this 😁 I’m no stranger to cancer both parents have had colon and then my Dad passed of lung cancer 2years ago but it’s dif when you are the patient 😐 I’m just about to look through all the links. Enjoy Darwin and the warmth for me thanks again everyone really appreciated 😁 x

  • arpie's avatar
    arpie
    Member
    6 years ago
    So sorry to see you here, @Sunshine7, but you are in the best place here, to ask away on any question and you’ll get honest answers from those who’ve gone before you.  Hopefully you’ll have a smoother road of it from now on xx

    As @iserbrown said, deep breaths, take one day at a time ... if you are able, keep yourself busy doing things you love doing, to stop your brain going into overdrive.  Stay away from Dr Google ... so much of the info is old hat and everyone’s condition is different.

    I am about 2hrs up the coast from you, but more than happy to catch up with you when you are up to it xx. I am currently enjoying a week in Darwin with another ‘breastie’  from WA, the lovely @"Annie C"

    Is your treatment at John Hunter?  I went to Sydney for my surgery in 1/18, then had my Rads at Port Macquarie (as they weren’t available near me.)

    yes, your Medical Team will arrange all you initial appointments, tho your GP will  need to give you long term referrals to all your specialists as from memory, the original referrals only last 3 months.

    I’ve got a box now for all my ‘stuff’ ....  Do you have some one to go to your meetings?  A spare pair of ears can help.  I also recorded all my meetings with the Specialist, Rad Onc and Onc in case I want to go over what was discussed, as you are pelted with so much info, it can be difficult to ‘hear it all’.

    take care, and all the best xxx
  • Riki_BCNA's avatar
    Riki_BCNA
    Member
    6 years ago
    It can be also be very overwhelming with all the information available @Sunshine7 and your treatment team will be a great source of reliable information and be best placed to help you navigate the information regarding treatments for your individual situation. You can ask your surgeon about a BCN as they are often aligned in a team. Don't hesitate to call the BCNA Helpline also to speak to a cancer nurse for support along the way. Take care of you.
  • Riki_BCNA's avatar
    Riki_BCNA
    Member
    6 years ago
    Hello and welcome to the online community @Sunshine7

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order the My Journey Online Tool if you haven't got one yet. 

    It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    How to post on the main forum – use this link to get to the main forum and begin a new post. https://onlinenetwork.bcna.org.au/post/discussion

     

    Navigating the online community formerly the what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread


    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 


    My Journey online tool and other resources. 

    https://www.myjourney.org.au/signup


    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9 am to 6 pm Monday to Thursday and 9 am to 5 pm on Fridays.  

     

    How to understand your pathology reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

  • Zoffiel's avatar
    Zoffiel
    Member
    6 years ago
    Don't worry too much about organising appointments. That is someone else's job though it does pay to ask why you have been given the referrals you will receive.
    If sounds like you may be a bit like myself and others on the site--tending  towards liking control. I think that is a good thing, but get ready for a heap of incoming information.
    You can, and should, request copies of all your test reports. Buy a decent concertina folder and put everything in it. Everybody's names, business cards etc. It may seem at the moment that everything is permanently seared into your consciousness, but two years down the track you will forget dates and details.
    It's early days, try for the old 'alert but not alarmed' mantra until you figure out what is going on. You have a whole new language to learn. It takes time. Mxx
      
  • Sister's avatar
    Sister
    Member
    6 years ago
    Welcome @sunshine7 Sorry that you're here but glad you found us.  You will know more about treatment once the surgery is completed as the node status will come back in the path report and that may determine the next stage.  Once that's known, your surgeon will do the co-ordinating of treatment with onc and radiation.  I had the hard copy "My Journey" but I'm pretty sure you can sign up for the online one on the home page for this website.  As for a bc nurse - I've no idea because I never really had one.  

    Your GP should be able to go through the path report with you in to help you understand it but is unlikely to be involved much in your treatment (although obviously it's helpful that the GP knows what's going on - mine gets included in any test results so that he is aware of any changes).

    Feeling overwhelmed is perfectly natural and most of us have been there.  If you have someone close to you who you trust to stay calm and clear-headed, it's good to take that person to your appointments if you can as so much is hard to take in.