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Kathryn Louise 65
Kathryn Louise 65 Member Posts: 4
edited October 2016 in Newly diagnosed
A little overwhelmed right now, just glad I found this page.
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  • Nicole_M
    Nicole_M Member Posts: 5
    edited March 2015
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    Hi Kathryn Louise. I am very much a newcomer here. Welcome...not that it's a group anyone wants to need. :)

    I have found it very useful to read through old posts, and have really appreciated Katie's support.

    I was first diagnosed with a Phyllodes tumour about six weeks ago I think. I am already two weeks post surgery and am recovering well. I am one of the lucky ones as my pathology came back saying the tumour was benign.

    I guess the best thing to do is share as much as you feel comfortable with, when you feel comfortable doing it.

    Take care,
    Nicole
  • Nicole_M
    Nicole_M Member Posts: 5
    edited March 2015
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    Hi Kathryn Louise. I am very much a newcomer here. Welcome...not that it's a group anyone wants to need. :)

    I have found it very useful to read through old posts, and have really appreciated Katie's support.

    I was first diagnosed with a Phyllodes tumour about six weeks ago I think. I am already two weeks post surgery and am recovering well. I am one of the lucky ones as my pathology came back saying the tumour was benign.

    I guess the best thing to do is share as much as you feel comfortable with, when you feel comfortable doing it.

    Take care,
    Nicole
  • Meredith
    Meredith Member Posts: 5
    edited March 2015
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    Hi Kathryn Louise,

    We all understand that overwhelming feeling you have right now, you are going through a very stressful and confusing time, but try to be strong and positive and learn as much as you can so you can make informed decisions. I am so glad you found this support group as it has been the best source of information for me and others. I had a borderline phyllodes tumor removed last December/January and all is going really well for me. At first they thought it was a fibroadenoma and only after that was removed and sent to pathology did we find out it was a phyllodes type. So I opted to go back in and have a wider margin taken from around the area to be more confident they got it all. I have ultrasounds every 3 months at the moment and see my surgeon for check ups but so far, so good. Please know that you have a group of women here that will listen to you and have a good understanding of what you are going through. One of the hardest parts for me was that no one i knew had heard of Phyllodes and I felt no one understood. Talk to those close to you and let them support you. Keep in touch, Best Wishes, Meredith :)

  • Meredith
    Meredith Member Posts: 5
    edited March 2015
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    Hi Kathryn Louise,

    We all understand that overwhelming feeling you have right now, you are going through a very stressful and confusing time, but try to be strong and positive and learn as much as you can so you can make informed decisions. I am so glad you found this support group as it has been the best source of information for me and others. I had a borderline phyllodes tumor removed last December/January and all is going really well for me. At first they thought it was a fibroadenoma and only after that was removed and sent to pathology did we find out it was a phyllodes type. So I opted to go back in and have a wider margin taken from around the area to be more confident they got it all. I have ultrasounds every 3 months at the moment and see my surgeon for check ups but so far, so good. Please know that you have a group of women here that will listen to you and have a good understanding of what you are going through. One of the hardest parts for me was that no one i knew had heard of Phyllodes and I felt no one understood. Talk to those close to you and let them support you. Keep in touch, Best Wishes, Meredith :)

  • Shazazzle
    Shazazzle Member Posts: 11
    edited March 2015
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    Hi Kathryn Louise, welcome honey. Good on you for seeking support by joining this group. Sometimes as women we have to soldier on when we are unwell and as mums we tend to put others needs before our own. Remember that you don't have to be brave here or soldier on here. If you have a concern, need to vent or just need a hug please just ask and we are here for you.
    Sharon x
  • katie76
    katie76 Member Posts: 103 ✭
    edited March 2015
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    Thanks Kathryn Louise for making your first post here. I would also like to say Thanks too to our wonderful members that have replied here to this post. Your support is invaluable for our newer members and never underestimate the value of just saying hello and I know what you are going through. Knowing that someone else is out there for support makes the journey a little easier. Merry Xmas all. Cheers Katie xxxx
  • IP
    IP Member Posts: 17
    edited March 2015
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    Hey Kathryn Louise

    It's all a bit overwhelming, but with support, you will make this journey just as we all have.  My apologies to you that I haven't been able to reply to my email alert  earlier.   My Mother in law has recently been diagnosed with a different kind of breast cancer to what we share in this group - so I have wanted to support her through her surgeries etc.

    Please remember that we are all here to talk to you.  If you can navigate through the web site to the home page - order a "My Journey" package.  The information was so helpful to me.  It's not specific to Phyllodes but I found that when I understood more about BC in general I became more confident and organised within my life.  

    To all the members of this group -- Enjoy the upcoming Christmas and New Year with your family and friends xo Irene 

  • Colleen63
    Colleen63 Member Posts: 55
    edited March 2015
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    Hello Kathryn Louise and  I am happy to read that your diagnosis was benign which is the best outcome for you.  You seem to be in good hands and sorry that I did not respond in December but my husband had major surgery that week and I have been in the nursing role since but all good now.

    The reaction of everyone I knew was 'I've never heard of it' and alarm that such a tumour had such little publicity.  The main emphasis is on the more common breast cancers because it effects more women than Phyllodes does but by having this site it helps spread the word and makes others more aware of Phyllodes.

    I am 2 1/2 years post surgery for my very large tumour and so far all is well and in July I will see my surgeon again for a check up.

    Best wishes to you for a good recovery and may you never have it return.

     

    Colleen

     

     

  • roan2311
    roan2311 Member Posts: 12
    edited March 2015
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    Welcome Kathryn Louise... Finding support for something so rare as PT is valuable. It's a tumor that can be confusing and frustrating. I've learnt to always check for lumps and if in doubt get it checked by a GP. And find a GP that actually knows what PT is cause there isn't many. Take care.
  • IP
    IP Member Posts: 17
    edited March 2015
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    Hey Kathryn
    Welcome to our group. Sharing and support is so important and thank you for sharing. We all have different stories but somehow we are the same. It is an overwhelming time no matter how our journey plays out.
    I'd like to share with you that one of the lessons I learnt by having breast cancer is that I found confidence by gaining knowledge about my condition, comfort in knowing I'm not alone ( joining this group and being in touch with my breast care nurse) and embracing every day because I can.
    So pleased you are recovering well.
    IP

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