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annabelle_91
annabelle_91 Member Posts: 1
edited October 2016 in Newly diagnosed

Hi Ladies,

It's been really inspiring to read all your stories and I'm really glad that Katie decided to start this group. Don't know if people are still active, but I just wanted to share my story.

I'm 21 years old and had a lump removed in May 2011, which turned out to be a Phyllodes Tumor and was half a kilo, no jokes. The Dr. was very open and told me there was a 25% chance of it coming back. Well, I had another one removed in January this year and then another in August.

For these three I was pretty relaxed because thats the attitude the health professionals take; just whip you in and out of hospital like its no big deal. But now I think its come back again and I'm wondering just how many times I'm meant to get a lumpectomy! 

So, to the Sydney-siders here: do you know of any good specialists so I can get a second opinion?

Thanks, and wishing you all good health!

Annabelle

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  • katie76
    katie76 Member Posts: 103 ✭
    edited March 2015
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    Hi Annabelle, welcome to the group and i am glad you found us. There are a few Sydney siders in the group - I will see if they can contact you. I have a specialists name in Sydney that has an interest in phyllodes - I can private message it to you once I locate his details as it was a while back that I gave it to another member. Please post and ask questions as you need. Cheers Katie.

  • Chantel
    Chantel Member Posts: 8
    edited March 2015
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    Hi Annabelle, as I read I am in hospital for another margin clearance for mine! A huge roller coaster ride for me over the past couple of months, I will share some more when I get out!! I live in Coffs Harbour and last week was sent to Westmead to the breast cancer clinic, the specialist I saw was Elisabeth Elder, she's the bomb, amazing!! Full of knowledge and has done slot of studies into breast cancer and particularly reconstructions, people have told me if u need a mastectomy and reconstruction her surgery is amazing, she is also fairly young and funky, I would def recommend her for a plan and some more advice!!! Good luck, stay positive!!! X
  • TA5686
    TA5686 Member Posts: 8
    edited March 2015
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    Hi there, such a journey this is! I would my lump in march 2011 off to get my two year check ups in a few weeks. I decided on a full mastectomy and lat dorsi reco so I have not had any experienced with reoccurrences as I removed all the tissue. I know there is a Facebook group I'm part of and there is so many reoccurrences when people only have a lumpectomy ! Have you thought about a mastectomy ? I now it's a huge decision and very personal but it certainly means it decreases reoccurrences . I'm very happy two years on, has been a massive journey with lots of operations but happy they are all behind me now. Wishing you clarity with your decision! Keep fighting miss x x
  • roan2311
    roan2311 Member Posts: 12
    edited March 2015
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    In deed it is a roller coaster ride. It's been over a year and I was hopeful about my chances of the tumor not reoccurring. Just found a lump near the last one about a few days ago and will be booking another appointment for a scan. A question mine was borderline and had lumpectomy and then clear margins. Is mastectomy only better if its malignant and has anyone been treated with radiation? Anyway, I'm just hoping this lump is not PT again cause the fear of reoccurance can me torture sometimes.

    Take care everyone!
  • Chantel
    Chantel Member Posts: 8
    edited March 2015
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    Mine was also borderline, I did alot of research through research papers and studies, (I'm a nurse) and I wasn't happy with it being there at all, mostly because of the unpredictability, there are small chances it can come back malignant and there have been cases of it becoming metastatic even as a borderline. I know the journey is different for every woman but for me the stress of it ever coming back was too much for my mind. I had 3 surgeries before my mastectomy and thought "how much of my boob is going to be left if they keep taking margins or lumps?" So I wanted it off, I had a reconstruction straight away and haven't batted an eyelid, I now have peace of mind and feel like I can move on without any problems. The blasted thing does enter my mind sometimes but not like it did. I also had a plastic surgeon from Sydney do my reconstruction, I had the 'breast team' do the mastectomy and the 'plastics team' do the reconstruction, although my Professor is known to do a great reconstruction aswell, she referred my to the plastics Dr.

  • Chantel
    Chantel Member Posts: 8
    edited March 2015
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    Mine was also borderline, I did alot of research through research papers and studies, (I'm a nurse) and I wasn't happy with it being there at all, mostly because of the unpredictability, there are small chances it can come back malignant and there have been cases of it becoming metastatic even as a borderline. I know the journey is different for every woman but for me the stress of it ever coming back was too much for my mind. I had 3 surgeries before my mastectomy and thought "how much of my boob is going to be left if they keep taking margins or lumps?" So I wanted it off, I had a reconstruction straight away and haven't batted an eyelid, I now have peace of mind and feel like I can move on without any problems. The blasted thing does enter my mind sometimes but not like it did. I also had a plastic surgeon from Sydney do my reconstruction, I had the 'breast team' do the mastectomy and the 'plastics team' do the reconstruction, although my Professor is known to do a great reconstruction aswell, she referred my to the plastics Dr.

  • Chantel
    Chantel Member Posts: 8
    edited March 2015
    Options

    Mine was also borderline, I did alot of research through research papers and studies, (I'm a nurse) and I wasn't happy with it being there at all, mostly because of the unpredictability, there are small chances it can come back malignant and there have been cases of it becoming metastatic even as a borderline. I know the journey is different for every woman but for me the stress of it ever coming back was too much for my mind. I had 3 surgeries before my mastectomy and thought "how much of my boob is going to be left if they keep taking margins or lumps?" So I wanted it off, I had a reconstruction straight away and haven't batted an eyelid, I now have peace of mind and feel like I can move on without any problems. The blasted thing does enter my mind sometimes but not like it did. I also had a plastic surgeon from Sydney do my reconstruction, I had the 'breast team' do the mastectomy and the 'plastics team' do the reconstruction, although my Professor is known to do a great reconstruction aswell, she referred my to the plastics Dr.

  • katie76
    katie76 Member Posts: 103 ✭
    edited March 2015
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    Hi again, I agree with the above. I too had a mastectomy by choice (I was also 34) because I had 2 borderline tumors and thought it was my best option considering the limited treatment options and the high reoccurrence, and I didn't think I would cope with it reoccurring. Wishing you all the best and I hope it is not a reoccurrence, do plenty of your own research, ask lots of questions and make the decision that feels right for you. There is also lots of information scattered through the blogs in this group too that you may find useful. Cheers Katie. Xx
  • Chantel
    Chantel Member Posts: 8
    edited March 2015
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    I have to agree, my surgeon told me if it were to return it's a mastectomy, no questions, so when I went in to have a 'clear margin' cleared some more and there was some new phyllodes I had everyone backing me for a mastectomy. I know this is not for everyone but what I wanted from the start. It's not ever going to be an easy decision. Hope you nut through it ok.

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