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GreengirlGreengirl Riverina NSW Member Posts: 33
edited January 20 in Newly diagnosed
Had a mammogram and ultrasound on 30th Dec after noticing increased density in left breast. Got a phone call on the drive home. I live one hour away from larger medical facilities. I’m 47 .Married. 3 boys, youngest just turned 18 and live in a small country town .Had the biopsy later followed by lumpectomy in Sydney ( 4 hours away as the nearer surgeon was away at the time) . My surgeon rang today and pretty good news. Mass 15mm. Grade 2 . Sentinal node biopsy was clear.At biopsy she said it was a hormone driven type . So radiotherapy ( one hour away ) but probably not chemo she is going to check with someone . My post op appointment is on the 31st but she said she couldn’t keep the good news to herself which was much appreciated. Of course great news but not totally convinced it hasn’t spread somewhere. I presume most people feel this way. Thanks for listening. 
Greengirl x 
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Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 4,171
    So sorry to see you here, @Greengirl - but you are in the right spot for support and and any questions that you may have.

    your diagnosis and results are very similar to my own, just over 2 years since my surgery.  I also skipped chemo, but had 4 weeks of rads, followed by hormone tabs for up to 5 years, possibly more.

     That is terrific that your surgeon contacted you as soon as she had the results, as it really does much with your head, the waiting!

    Trust your team that they have got it all ... but still be vigilant of any unexpected aches or pain in the future.  If they Last longer than a few weeks, my mantra is: if in doubt, get checked out!

    I am also rural and had my surgery in Sydney and my Rads in Port Macquarie.

    what town/city do you live in? You can add it to your profile, so others in the area may be able to point you towards any services in your area.

    take care, and know that you are not alone as you navigate this quagmire!  Ask any question you have and we’ll do our best to answer them honestly, to help  Xx
  • jennyssjennyss Western NSWMember Posts: 940
    Dear @Greengirl,

    from jennyss in Western NSW
  • Dory65Dory65 Member Posts: 223
    Hi Greengirl,
    I was diagnosed 29th October. My advice is to always get copies of all of your test results and reports, including those to your GP. Keep them in a folder along with a list of your questions and your notes. Make sure you understand the information and ask if you don't. You are your own advocate and you are in charge of coordinating your treatment (took me a few weeks to figure that out). Take that folder with you to all of your appointments. Some doctors will give you written info, some will just talk (and you or your support person will have to keep up and take notes). Two out of three of my doctors were very thorough and had read my pathology, checked my test results etc. before my appointments. After a two week wait to see another doctor (oncologist), my confidence was shaken. No preparation before meeting me, seemed to be distracted by pressing matters elsewhere, took phone calls on mobile and left the room twice, and made a major (incorrect) assumption which I queried (because I had read my pathology report). This debacle resulted in several weeks delay to commencement of treatment while the matter was taken to the Multidisciplinary Team Meeting and the Oncotype DX test was done. I hope your path is smooth and worry-free, but just remember to take charge. It's your body.
  • GreengirlGreengirl Riverina NSW Member Posts: 33
    Thankyou ladies for your reply’s and sound advice . I haven’t worked out how to directly reply to each comment yet 🤪🤔 but thank you 🙏🏻.
    Arpie I’m from Cootamundra NSW and will have my radiotherapy in Wagga.BewilderedButHopeful sorry your oncologist was a big flop and thanks for the tips . Take care and have a great day x 
  • arpiearpie Mid North Coast, NSWMember Posts: 4,171
    edited January 20
    Maybe @Giovanna_BCNA could add Cootamundra to your thread title, so any living nearby can see it.  

    If if you want to reply to specific people, just put ‘@‘ in front of their name in the reply and hit enter when the name shows as ‘blue’ ... and the person will be notified of your reply.

    @Greengirl I record all my meetings on my phone as it gives you the choice of going over it later on, to review each comment.  

    I put a post up the other day with ‘tick lists’ re questions/side effects/symptoms for post op appointments with your team/GP.   Click on the docs at the bottom of the post.
    https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

    Do you have a good buddy to attend meetings with you? It is always good to have a second set of ears, as well as company.

    I changed Oncs mid stream as well ... very important to be comfortable and confident with your team.  My experience was very similar to @BewilderedButHopeful.  It was most off putting.  He was distracted the whole time and didn’t take my extreme side effects seriously.

    Yep, I have a big box for all my stuff .... including xrays etc so all is in the one spot.

    Does Wagga have onsite accommodation for radiation patients?  Port Mac does ... it was just a 2 minute walk to treatment. As the rads treatment is usually daily, it saves a lot of driving.

    Being rural, you can get refunded for petrol costs and subsidised for your accommodation.  Join up here. You will need your GP and specialist to fill in the first forms, then, just send the dates you attend (tho I always get them to sign the sheet for each trip as backup.)
    http://www.iptaas.health.nsw.gov.au/home

    Take care, all the best xxx
  • arnlybubarnlybub Member Posts: 16
    Hi Greengirl,

    I'm in Wagga and am happy to help with some of the questions you might have re your diagnosis and treatment.  I was diagnosed in April 2018 and had chemo and radiation at the Calvary Cancer Centre in Wagga.    I know that there is community transport available and also Lillier Lodge provides accommodation to those undertaking treatment from other towns in the Riverina. 

    Has the McGrath Nurse been in touch with you yet?

    I know it's scary as anything at the beginning but believe me it does get better as your treatment plan goes into action.  

    Ask me anything you like and I'm happy to catch up with you when you're in Wagga.

    Take care and as the others have said, you're not alone in this xo
  • GreengirlGreengirl Riverina NSW Member Posts: 33
    @arpie thanks for the tech support 👍
    and thanks for all that info. Yes Wagga has some accommodation that I will take advantage of if I get too tired. I have had some contact with a couple of Coota girls that have been through and going through treatment atm. Which has been lovely x
  • GreengirlGreengirl Riverina NSW Member Posts: 33
    @arnlybub Thankyou so much for so very generously reaching out The McGrath breast nurse hasn’t been in touch as yet. I sent her a message but haven’t heard back .
    I think it’s because the breast care nurse from Sydney has been looking after me for the surgery etc. I just wanted to put myself of her radar. Would you mind telling me your oncologist and radiologists name ? Did you go public or private and if so any out of pocket costs ? I have been in touch with a couple Coota girls who have been wonderful but one is on the tail end of her treatment and I don’t want to overwhelm her with too many questions she has a full plate and the other lady had her treatment some time ago. Thanks again in advance @arnlybub 💖
  • GreengirlGreengirl Riverina NSW Member Posts: 33
    @arpie @arnlybub @BewilderedButHopeful
    Hope you don’t mind I’ve stalked all your stories. Thank you and best wishes to you all x
  • GreengirlGreengirl Riverina NSW Member Posts: 33
    @jennyss from Dubbo thanks for best wishes I have also stalked you 😊 
    All the best to you also 👍
  • arnlybubarnlybub Member Posts: 16
    @Greengirl - I'll send you a private message with all the details...


  • Beryl C.Beryl C. Member Posts: 262
    Greengirl I was diagnosed in June 2011, no need to go into details but I have had a couple of procedures, radiation and  have had Herceptin infusions every three weeks for eight years and this will continue. Keep in mind that all treatments are suited to each individual and some are very short term. At the very beginning I had a talk with my GP about private versus public - he did not advise but gave me information, based on this I decided to go public. Its been eight years and will continue - my only cost has been parking. Sharing stories and 'stalking' other posts has kept me calm during tough times. Keep in touch. xxxxxxxxx
  • arpiearpie Mid North Coast, NSWMember Posts: 4,171
    Haha, stalk away .... we’ve all done it!

    @Greengirl, my rads were public and cost nothing, whilst I was private for surgery and about $6000 out of pocket - but I wanted it done as soon as possible ... no waiting!

    My rads accommodation was heavily subsidised too and I went home on weekends.  Hubby came with me.  I almost treated it as a holiday! How far is Coota from Wagga?  If you can, treat yourself to staying ... at least for a few days each week, so you don’t have to travel so much. Treatment is usually about 4 weeks, Mon-Fri.

    I hope  you’ll find the rads to be quite easy, so long as you don’t burn.  Tell them immediately if you burn - and make sure you lay the lotions on 2-3 times a day but not on the morning of your treatment.  

    Terrific that you can can catch up with @arnlybub in Wagga too!

    Take care xx


  • GreengirlGreengirl Riverina NSW Member Posts: 33
    Thanks @Beryl C.. I went private for surgery mainly because one of the breast surgeons in Wagga is off sick atm and the other one was away at the time of my imaging result . Wouldn’t have made any difference to my prognosis I’m sure if I had waited but I was keen to get a plan sooner rather than later. Saw the Sydney Surgeon shortly after my imaging in Wagga and she organised the biopsy on the same day.I was back for surgery about one week later without having to see her a second time which was good .I’m definitely hoping to go public for the other bits 🙏🏻. Got more exciting things to spend my money on 💃🏼
  • GreengirlGreengirl Riverina NSW Member Posts: 33
    @arpie Coota is at least one hours drive to Wagga. So a 2 hour drive daily there and back.Thanks again for the info and advice. x
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