Forum Discussion

Yummy_mummy's avatar
Yummy_mummy
Member
13 years ago

Phyllodes Tumor

Hi All, my name is Tracy, I am 39, married and have two daughters, 13 yrs and 17yrs. I have recently been diagnosed with a Phyllodes Tumor, my surgeon has been very good and also gave me some websites to find out what a phyllodes Tumor is. I also have a very strong family history of breast cancer- Nan, 4 Great Aunts, 1 Aunt and my Mum. My specialist has referred me to have Genetic tests to see if I have the genetic gene, I am waiting to hear back from them regarding the forms that I sent. I live in Melbourne, it would be great to talk,share or even meet in person with other ladies going through or that have gone through this. I am discussing having a double mastectomy and I will also need to have my ovaries removed as I had a previous condition that was being controlled with the contraceptive pill, however I am no longer able to carry on taking the pill because of the increased risks that it brings. If anyone has any support or thoughts I would love to hear from you. Kind regard, Tracy
genetic-testing
mastectomy

7 Replies

  • Marine's avatar
    Marine
    Member
    13 years ago
    Wow! Thanks for getting back to me with all this info! I it must put your mind at ease having surgeons who know about this tumour. I don't blame you one bit for choosing the best option to protect your future health by having a mastectomy. The more studies I find on this cancer the more determined I am to do what is neccesary to give myself the best chance of living a fear free life. My doctor has made an appointment for me to see an oncologist and she is calling my surgeon to see if he'll do a bilateral mastectomy. It sounds drastic doing both but I'm not interested in reconstruction at all, or wearing a prosthetic. If I don't have any luck I'll get a referal to Olivia's unit at the Austin. Enjoy your time with your family. I hope your results come back all good. Please stay in touch and keep me up to date. Good luck and thank you! Marina :0) xx
  • Marine's avatar
    Marine
    Member
    13 years ago
    Sorry IP, I was actually asking Tracy, who wrote the letter above you and who does live in Melbourne, and IS discussing mastectomy with her surgeon. Perhaps I posted this in the wrong place, I am new here. I have done nothing but read since my diagnosis and I only stick to cancer hospital articles on the net, medical websites, legitimate studies, and the phyllodes support group on facebook which has over 500 members who have been through this. Thanks for your comment anyway. :0)
  • Marine's avatar
    Marine
    Member
    13 years ago
    Sorry IP, I was actually asking Tracy, who wrote the letter above you and who does live in Melbourne, and IS discussing mastectomy with her surgeon. Perhaps I posted this in the wrong place, I am new here. I have done nothing but read since my diagnosis and I only stick to cancer hospital articles on the net, medical websites, legitimate studies, and the phyllodes support group on facebook which has over 500 members who have been through this. Thanks for your comment anyway. :0)
  • IP's avatar
    IP
    Member
    13 years ago

    Hey Marine

    You sound very anxious, as we all are, after any diagnosis with the words cancer or tumour in it. 

    Now can I clarify one thing that you stated in your message: If you re read my blog I didn't say that my doctor is WILLING to discuss a mastecomy I said that I opted only to have the lump I had removed.  My surgery was only last week and I am now waiting for my follow up appointment with the pathology results.  It's possible that I , like you, may have to have more removed OR I may have had the right amount taken out.  This is a very nervous time for me as I don't know what they might find.  BUT I am staying very positive and determined to only be positive.

     I am only very small breasted anyway and my decision to not have a masectomy was MY decision as I said to my Doctor that I didn't see any reason to take away good breast tissue if there was a chance there was nothing wrong with it.

    If you think a mastecomy is right for you - I can only say that you discuss this with your Doctor or have another opinion.  It is your health and your decision of what you have done under the guidance of the health professionals.  Can I also suggest that you be careful of what you read.  Some of the info on "Google", for example, is not medically backed and can be very distressing.  I stuck with the bcna web site and my Breast care Nurse contact.  Did you get a phone number for a Breast care Nurse person you could ring?

    My doctor is Dr Peter Schwartz of St George Private Hospital.  The hospital is located in Kogarah - a suburb of Sydney.  For my diagnosis any my individual case Dr Schwartz is just wonderful.

    I hope this information helps you.  Wishing you good health.

     

     

  • Marine's avatar
    Marine
    Member
    13 years ago
    Hi, I'm in NSW but I used to live near Belgrave in Melbourne. I recently had a large phyllodes tumour removed, 50x40x35mm with a following surgery a week later to get a bigger margin. There was 10mm of tumour left and a clear margin of only 3mm, which is not enough. I am a size 12 D, so this was a big tumour it was borderline. My general surgeon sent me home and said come back in a year. From everything I've read, thats just not good enough. I can't get anyone to refer me to a cancer specialist. You would think they just removed a boil. You said your Dr is willing to discuss mastectomy, I think this would be the best option for me. Would your concider telling me who or where your doctor is ? I'm banging my head against a brick wall with the doctors in this town. Thank you for reading this.
  • Marine's avatar
    Marine
    Member
    13 years ago
    Hi, I'm in NSW but I used to live near Belgrave in Melbourne. I recently had a large phyllodes tumour removed, 50x40x35mm with a following surgery a week later to get a bigger margin. There was 10mm of tumour left and a clear margin of only 3mm, which is not enough. I am a size 12 D, so this was a big tumour it was borderline. My general surgeon sent me home and said come back in a year. From everything I've read, thats just not good enough. I can't get anyone to refer me to a cancer specialist. You would think they just removed a boil. You said your Dr is willing to discuss mastectomy, I think this would be the best option for me. Would your concider telling me who or where your doctor is ? I'm banging my head against a brick wall with the doctors in this town. Thank you for reading this.
  • IP's avatar
    IP
    Member
    13 years ago

    Hey
    Tracy - It's great to make contact with someone whoo has had the same diagnosis and normally I wouldn't contact a complete stranger ...but we aren't really because -- you have the same tumour as me. 

    The research I have been given is that we have a very rare tumour and not much is known about it.  However, the positives are all there with recovery and survival rates. 

    My surgeon is a very positive, caring man and I am armed with that and the support of my family and friends to get me through my treatment.  I have decided to remove the necessary tissue rather than have a masectomy and I am really looking after myself with nutrition, sunshine, fresh air, meditiation and rest. 

    That doesn't mean I am sitting around I am still doing what we have to do as Mums and work ...and... and.... all the stuff we have to do.  I find long walks to be my medititational- head- clearing- time to myself. 

    I have no experience with breast cancer other than knowing unrelated people who are survivors. 

    Someone once said to me:" There is only 2 rules in life: One is never quit.  The second is don't forget rule number one." : )