Forum Discussion

bethyb's avatar
bethyb
Member
12 years ago

My PT Saga

Hi, everyone! Great to see a group about phyllodes that's based in Australia. I'm hoping we can all swap a bit of information.

I found two lumps in 2006 when I was 19. It grew progressively over the next few years, but no GPs considered this a problem. It wasn't until 2010, when seeing a new GP who has unfortunately now retired, that anybody decided to send me for a biopsy. The biopsy came back as fibroadenomas, but because of the size, I elected to have them removed anyway. Post-surgical pathology confirmed they were benign phyllodes.

Since 2010, I'd found lots of new, little lumps, assumed to be fibroadenomas. During a follow-up ultrasound in mid-2012, it was seen that a lump had recurred near the site of one of my original phyllodes. It was biopsied, found to be unclear whether it was fibro or PT, so removed for safety last September. Another benign phyllodes.

About a month after that surgery (early October) once all my swelling had gone down, I was back to performing regular breast checks and found another lump. It hadn't been there the day of my surgery a month before (I'd had an ultrasound for wire localisation before the procedure) and it already felt quite big. I had it biopsied in February of this year and they said it was fine. It's just that I feel as though it's still growing. And the core biopsies weren't accurate the last couple of times. I wonder at what point I can actually stop worrying. I'm due for another ultrasound in February, so I suppose I will hold out until then before making any decisions.

But my question is: how responsive has everybody found their specialists to their concerns? I don't want to drum up an issue more than it needs to be. But then, it's my body and my health. I'm in the Brisbane area, does anyone have any rave reviews of any specialists?

biopsy
  • shiney50's avatar
    shiney50
    Member
    11 years ago

    I am in Brisbane and part of the facebook group now.

    Dr Chris Pyke at Mater Adults and Susan Bell are my surgeons and Oncologist. Both have been fantastic and ongoing radiation is taking place at Mater Oncology Unit for me atm..

    I am on the Southside..

    Shiney50

  • KTCC's avatar
    KTCC
    Member
    11 years ago
    I can also give you the details of my breast surgeon, who really helped and supported my decision for a bi lateral mastectomy. He is based at Mater Private, and was also recommended by all the intensivists I work with, along with my GP, and the head of ED at another hospital. When my biopsies came back they also found a huge area of atypical cells in the 'healthy' breast, which my surgeon said would have been of major concern later. I was really grateful to have a surgeon that listened to me, and called in the same plastic surgeon as Katie had. Let me know if you'd like his details. Xx
  • bethyb's avatar
    bethyb
    Member
    11 years ago

    Thank you! Yes, the fibro thing is frustrating. I have a big lump, growing quickly at the moment. Everyone insists it's just a fibroid, but can they blame us for being wary?

  • KTCC's avatar
    KTCC
    Member
    11 years ago
    Yes, I love the it's a fibroadenoma routine.......until the pathology comes back, even after FNA and two core biopsys. My notes still say fibroadenoma as nine bothered to change them. I had the same surgeon as Katie, and she is brilliant. I cannot speak highly enough of her, despite my personal setbacks. Good luck.
  • KTCC's avatar
    KTCC
    Member
    11 years ago
    Yes, I love the it's a fibroadenoma routine.......until the pathology comes back, even after FNA and two core biopsys. My notes still say fibroadenoma as nine bothered to change them. I had the same surgeon as Katie, and she is brilliant. I cannot speak highly enough of her, despite my personal setbacks. Good luck.
  • bethyb's avatar
    bethyb
    Member
    12 years ago

    Hi Katie,

    That would be lovely if you could send your specialist's details. Do you know if she has any particular experience (aside from yours, of course) with phyllodes?

    I'm looking at going down the preventative mastectomy path, because after years of tests and surgeries and biopsies (I've had about 6 core biopsies now - exhausted!) I'm just a bit over it.

    Thanks for your help! x

  • katie76's avatar
    katie76
    Member
    12 years ago
    Hi, I am in Brisbane also and had my surgeries at North West private Hospital. I was happy with my surgeon as she always listened to what I thought I needed and has always said if I have any concerns that I can make an appointment and come straight in. There are quite a few other ladies in this group from around Brisbane that have specialists at other hospitals. I just wrote on the previous blog by Shaila I will send a message to all our members and see if they can help you out. If you would like the name of my surgeon I can send it to your inbox. It is a common complaint by so many with phyllodes that they feel that they are overreacting about their tumor. I took the stance that I would find out as much as I could about phyllodes and always went to see my specialist as well informed as I could be so I could tell her what my plan was. I hope this helps. Best wishes. Katie.
  • katie76's avatar
    katie76
    Member
    12 years ago
    Hi, I am in Brisbane also and had my surgeries at North West private Hospital. I was happy with my surgeon as she always listened to what I thought I needed and has always said if I have any concerns that I can make an appointment and come straight in. There are quite a few other ladies in this group from around Brisbane that have specialists at other hospitals. I just wrote on the previous blog by Shaila I will send a message to all our members and see if they can help you out. If you would like the name of my surgeon I can send it to your inbox. It is a common complaint by so many with phyllodes that they feel that they are overreacting about their tumor. I took the stance that I would find out as much as I could about phyllodes and always went to see my specialist as well informed as I could be so I could tell her what my plan was. I hope this helps. Best wishes. Katie.