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LeonieV's avatar
LeonieV
Member
12 years ago

Just diagnosed - feeling very lost

Hello, I've never done an online blog before - so I hope I don't stuff it up! I've just been diagnosed with grade 3 invasive ductal carcinoma in my right breast (with postive lymph node).  Its a triple negative cancer.  I'm quite overwhelmed and trying to fgiure out what path to choose and medical teams and surgeons and reconstructive surgeons!  I was confirmed BRCA1 gene mutation a couple of years ago.  I thought I'd have more time.  I live in Perth (but I'm from QLD).  I'd love to hear from people about how to move forward. 

I'm single, and haven't had children (neither by active choice - life just turned out that way unfortunately).

I'm working on staying really positve - but am struggling a little bit. Thank you!

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  • Zekesmum's avatar
    Zekesmum
    Member
    12 years ago

    Hi Leonie. I am also in Perth - Bayswater. My sister who lives interstate was diagnosed with triple negative April 2012 Stage 1 Grade 3 no positive lymph nodes. She had a lumpectomy, radiation and chemo. In January 2014 she was diagnosed with the exact same cancer in the same breast again! Lucky she hasn't had any mets. So now she has had a mastectomy, is completing her second round of chemo, and will them have a prophelactic mastectomy and reconsstructive surgery. She is 47. Unlike some oft he other people here my response was to get as much information aout BC as possible and as my sister doesn't I pass on information she might find useful ignoring the out of date and pessemistic information which is around. I also encourage her to get other opinions and not to rush into decisions - a few weeks to consider options will not matter in the longer term for her. I do know that there are a lot of women living long, happy lives with triple negative so try and stay strong.  We don't have any other relatives to date that have had BC so it seems that it is a freak genetic mutation for my sister. If you want to have a chat let me know.

  • Zekesmum's avatar
    Zekesmum
    Member
    12 years ago

    Hi Leonie. I am also in Perth - Bayswater. My sister who lives interstate was diagnosed with triple negative April 2012 Stage 1 Grade 3 no positive lymph nodes. She had a lumpectomy, radiation and chemo. In January 2014 she was diagnosed with the exact same cancer in the same breast again! Lucky she hasn't had any mets. So now she has had a mastectomy, is completing her second round of chemo, and will them have a prophelactic mastectomy and reconsstructive surgery. She is 47. Unlike some oft he other people here my response was to get as much information aout BC as possible and as my sister doesn't I pass on information she might find useful ignoring the out of date and pessemistic information which is around. I also encourage her to get other opinions and not to rush into decisions - a few weeks to consider options will not matter in the longer term for her. I do know that there are a lot of women living long, happy lives with triple negative so try and stay strong.  We don't have any other relatives to date that have had BC so it seems that it is a freak genetic mutation for my sister. If you want to have a chat let me know.

  • Lisally's avatar
    Lisally
    Member
    12 years ago
    So sorry to meet you like this. It is such an overwhelming time; big hugs to you. This is a great network of amazing women, so you are on the right track. When I was diagnosed last November I found it really difficult to sleep, and coming on line to this forum was a lifesaver for me. Be good to yourself, take a friend to your appointments, take all the time you need off work, stay away from dodgy internet scary sites, assemble a great team of health care providers around you, trust yourself, take time to sit and enjoy the beauty of the world every day, and do whatever you need to do to stay sane, whether it involves copious amounts of chocolate, or movies, or walks in nature! Lots of love and thoughts to you! Xx Lisa
  • Sarah54's avatar
    Sarah54
    Member
    12 years ago

    Hello, the first couple of weeks can be very difficult but finding this site is excellent. I am sorry you need us but a huge welcome. Any time night or day you can hop on and get support and advise. There is a Perth after noon tea May 24th in Mount Lawley so if you join the group you will get an invite. A lovely bunch of Pink Ladies. I have only been once before. I am a public patient at RPH and in a week will be doing my 5th round of chemo and then only 1 more ye ha! Taking a friend to all appointments and you can ask to record. I cannot tell you how much I recommend this as my brain just goes off to La La land at appointments. Where are you in Perth? I am down here in Mandurah. Take one day at a time all the best and here's a healing hug Sarah54

  • Sarah54's avatar
    Sarah54
    Member
    12 years ago

    Hello, the first couple of weeks can be very difficult but finding this site is excellent. I am sorry you need us but a huge welcome. Any time night or day you can hop on and get support and advise. There is a Perth after noon tea May 24th in Mount Lawley so if you join the group you will get an invite. A lovely bunch of Pink Ladies. I have only been once before. I am a public patient at RPH and in a week will be doing my 5th round of chemo and then only 1 more ye ha! Taking a friend to all appointments and you can ask to record. I cannot tell you how much I recommend this as my brain just goes off to La La land at appointments. Where are you in Perth? I am down here in Mandurah. Take one day at a time all the best and here's a healing hug Sarah54

  • Robyn_W's avatar
    Robyn_W
    Member
    12 years ago
    Welcome to the online network.This is the place to come for support and advice on getting through your BC journey,from ladies that have gone before you.It is an amazing place,so try to make sure that you use it:) Firstly,remember that these days,BC in it's many forms,is very treatable,and most ladies go on to,lead long,healthy lives.And also chemo,radiation etc,is much more refined than it was years ago,and many ladies,even work through their treatment.I would advise you ,in the beginning,to be totally guided by your medical team,and only take it one day at a time.It is so easy to think ahead,and it doesn't achieve anything.Easier said than done though,but this is where this network is so great at supporting you:) There are many resources available,and the best ones are from the reputable places like BCNA and CANCER COUNCIL.Beware of all the rubbish out there on the internet.I want to tell you that there is an end to having BC,and once you get started on your treatment,you will begin to feel a lot more in control.The beginning is always the very hardest,because there is so much waiting,and getting tests done etc. Take care,and I'm sending you a big cyber hug.xoxRobyn
  • KerrynMacdonald's avatar
    KerrynMacdonald
    Member
    12 years ago

    Hey Leonie,

    I'm so sorry to hear about your diagnosis. Completely understand your feeling of being overwhelmed, there's a lot of information coming at you from all sides, particularly in the early stages. Strongly recommend taking a notepad to all your appointments as it's way too hard to remember everything they tell you! Take your time talking to different health care professionals, get second or third opinions if you feel you want them! And remember, there's no right or wrong decision, just the one that's right for you!

    I'm also a young (27), single, childless lady in Perth - so you aren't alone! If you want any recommendations on Perth doctors or fertility treatment feel free to send me a private message :) There's lots of women on here that will be invaluable resources to you.

    Take it one day at a time. Keep staying positive :)

    All the best,
    Kerryn