Hi everyone, I too am newly diagnosed

2

Comments

  • SoldierCrab
    SoldierCrab Member Posts: 3,429

    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
    a MY journey Kit 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. 



    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 Kits and other
    resources. 

    https://www.bcna.org.au/resources/

    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
    9am-6pm Monday to Thursday and 9am to 5pm 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

  • kmakm
    kmakm Member Posts: 7,974
    @Finch See above  :*
  • Finch
    Finch Member Posts: 302
    Hi there @Bettyboo I'm from Pakenham Upper and I had my radiation at Berwick also.  Finishing there about 7 weeks ago.  
    Firstly, when I originally saw my surgeon back in February and he discussed planned treatment with me , he also mentioned Tamoxifin.  I'm post menopausal also and guess what, I ended up on Anastazole.  Doctors and surgeons try and simplify what they're telling us as patients and somewhere along the line they think we've all heard about tamoxifen.   So they use that word generically, rather than treating us as intelligent beings who are interested in our own diagnosis.  I told numerous breast cancer friends I'd be commencing Tamoxifin after active treatment and each one reacted with surprise.  I'm not sure why doctors do this.  Who was your surgeon?  Maybe we had the same one.
    The Berwick Clinic don't like their patients starting AI medication until a fortnight after radiation treatment has finished.  So don't worry about not having a script for it yet.  
    Berwick is fantastic, you couldn't be going to a better place,  the staff, from the nurses to the radiation therapists are so kind and caring and explain everything to you.  
    You get free parking.  Make sure you get your parking ticket validated and then you won't have to pay.  
    The nurses there will keep an eye on you.  Any sign you are starting to burn make sure you see the nurse after each treatment.  I would go straight from the radiation room to the nurses room in my gown.  If the door was closed I would wait outside on a chair provided. 
    I seemed to burn quite badly which is unusual, and saw the nurse every day for dressings.  What I now know for sure is you heal up very quickly once radiation is finished.
    Berwick don't like MooGoo cream preferring QV cream 
    Radiation treatment usually starts 7 days after your mapping (the planning). Have you heard from them yet as to your start date?
    Who is your oncologist?  
    I'm happy to answer any questions or concerns Bettyboo.  It's such a frightening time, we are put in a place we are not familiar with and have to learn the ropes as quickly as possible.
    Wishing you all the best.  You take care .  Let me know how you get on. Hugs Xxxxx

  • Sister
    Sister Member Posts: 4,961
    @finch Do Berwick offer Mepitel film.  I used it during mine at the Royal Adelaide but had to ask for it - I don't think it would have been offered otherwise.  Obviously, I can't say for sure that it made a difference, but I have 2 very fine, straight "tan" lines where I think the film didn't quite meet up so it looks like it had an effect.
  • Finch
    Finch Member Posts: 302
    @Sister no they don't. I asked them at my initial consultation after reading up about it on this forum.
    They told me they did a trial with a group using it and a group not and there wasn't any difference.  Personally I think it would have helped me a lot.  The other ladies at Berwick I spoke to were nowhere near as burnt as I was,  I was the unlucky one, but it did heal quickly.  I'm now left with a very brown breast compared with the rest of my body.  Looks like it took off to the tropics for a couple of weeks and whacked on Coppertone . 
  • Bettyboo
    Bettyboo Member Posts: 33
    hi @finch - whereabout in Pakenham Upper are you? Im kind of classified as being in the Upper part but I have no clue. Thank you for the advice. I spoke to one of the breast care nurses at the surgeon's office and she is going to follow up some things for me. Ive written down the names of all those suggested medications, but interesting to read what you said about Tamoxifen. Im glad Berwick is good, they did look after me yesterday going through all the planning, I was a bit nervous but I survived. People are amazing, as I was leaving and about to put my ticket in the parking machine a lady who I had seen in the same clinic called out to tell me about the free parking, she had seen me inside. 

    I am from Mitcham, not long here in Pakenham, and I had my mammogram at Ringwood East so I had the surgeon (Michael Cheng) who told me my results and the oncologist is in Ringwood ((Julia Pellegrini) as well as the radiation oncologist, so a bit of a way to travel but I was referred to Berwick. My first radiation session is next Thursday.

    Im nervous about those burns, but the lady who took me through said I would be looked after.

    Thank you so much for your advice, Im so glad I found this site.
  • kmakm
    kmakm Member Posts: 7,974
    Good morning @BettyBoo. My breast surgeon is at the same practice as yours (he's wonderful). They look after you very well there. @tigerbeth goes there too. Have you seen the breast care nurses, Meg or Christine? Fantastic support. Meg's my gal and she's been amazing. Saw her last week and she's put me onto a yoga after cancer course. And my oncologist was at the same practice as Laura Pellegrini, though mine has left now and I'm going somewhere else. Small world!

    @Finch has given you some wonderful reassurance about Berwick. Would you like to meet for a cuppa one day? When you've settled into your rads routine maybe I could come down to Berwick and meet you at a lovely café @Finch has introduced me to down there. PM me if you'd like to. K xox
  • Bettyboo
    Bettyboo Member Posts: 33
    Wow, such a small world indeed. I love Meg and Christine, they are amazing. I would love to meet for a cuppa. I dont know Berwick very well, but sounds like you do. I will PM you, as long as I know how. xx
  • kmakm
    kmakm Member Posts: 7,974
    @Bettyboo Click on my name and then click on Message on the top right!
  • Doin'it
    Doin'it Member Posts: 377
    @kmakm you have just taught me something. I always wondered how to msg   :)
  • Finch
    Finch Member Posts: 302
    @Bettyboo I'm up in the hills off the Pakenham Road .  I'm away on holiday at the moment but as @kmakm wrote above, it would be great to meet up for a cuppa. The cafe in Berwick is a little gem . I'm not back until the 20th . PM me or chat with @kmakm to arrange . 
    xxx
  • kmakm
    kmakm Member Posts: 7,974
    Looks like it might be a party @Bettyboo!
  • kmakm
    kmakm Member Posts: 7,974
    @JenniA Excellent! I live to serve...  ;)
  • arpie
    arpie Member Posts: 8,129
    Terrific!! It Sounds like you are in really good hands, @Bettyboo  .... and great that your kids are supportive.  

    Yes, I was lucky with the Lodge for Rads - otherwise it was driving 1.5hrs each way, every day!  (And I am the driver! So figured it wouldn't be fair on everyone else on the road!!)  We are at Forster (sort of a 'small' version of Port Macquarie!)

    If you can meet up with the other girls at some stage, @kmakm  and others -  all the better!   Nothing like support from those who've been thru it!   

    Take care & all the best for your ongoing treatment!!  xx
  • Bettyboo
    Bettyboo Member Posts: 33
    Thank you everyone, I appreciate the support. You are all amazing!