Forum Discussion

Julia_M's avatar
Julia_M
Member
13 years ago

Diagnosed today - malignant

Hi, Just read some of your stories and relieved to find others have gone through what I am going through now. I am 25. After the usual tests were done with the initial biopsy indicating a borderline phyllodes tumour on my left breast. A lumpectomy was done the next day on 21st December - It has been a long wait for the pathology results - due to the holidays........ until today when Dr Saliba asked me to come in. The tumour is malignant and spots were found on the margins where it was close to the skin. She wants to take a larger margin out which would mean cutting the nipple, which she tried to avoid. The doctor said that the risk of reoccurrance was similar to a full mastasectomy as it was to removing a larger part. We will decide after a breat MRI to see if spots are elsewhere. I am more frightened of the possiblity if it has spread to other organs. Can that be pick up on any other scans. Does anyone else have or had a malignant tumour removed and how is it going......Thanks, Julia

5 Replies

  • Colleen63's avatar
    Colleen63
    Member
    13 years ago

    Sorry to read of your plight Julia and it is scary that our group is growing as this is supposed to be a rare diagnosis and I wonder just how rare it really is and that maybe fibroadenoma is commonly given as the diagnosis and many go off satisfied with this.  It is good that some are requesting a biopsy because the doctors should be doing this and not leaving it up to the patient to ask!

    You have many worries whether your spots are elsewhere but I am sure by now you will have had the MRI etc.

    Professor Ung here in Brisbane says that if mine comes back it is an instantaneous mastectomy and although you are much younger than me, I seriously would have gone for that but its sounds like your Dr would rather go back in.  Cells can travel and that would worry me so if I have to have a mastectomy on a rediagnosis, I will without delay.

    Healing vibes to you too and I hope you have had some answers now.

    Best wishes

    Colleen

  • Shazazzle's avatar
    Shazazzle
    Member
    13 years ago

    Hi Julia, I think the unknown is the scariest part of this. I hope the MRI comes back clean for you. Katie and other members here are very willing to share their experiences which help you feel like you are not alone. Good luck with the tests.

    x Sharon

  • katie76's avatar
    katie76
    Member
    13 years ago

    Hi Julia, sorry to hear you are going through all of this. I did not have a malignant tumour however my borderline tumour had either spread or I was growing a second one close to the original one. I had an mri but it was only a breast mri which showed no other tumours. I chose to have a mastectomy because no one could give me any guarantees that there weren't any other tumors in there or that I would grow more. You have some difficult decisions to make but you need to make choices that you feel are right for you! There are two support groups on facebook that have lots of members and lots of information about all the different treatment options. Just search phyllodes and they should come up. I also have some written info that I can email to you if you want some more info. All the best. Cheers Katie.

  • katie76's avatar
    katie76
    Member
    13 years ago

    Hi Julia, sorry to hear you are going through all of this. I did not have a malignant tumour however my borderline tumour had either spread or I was growing a second one close to the original one. I had an mri but it was only a breast mri which showed no other tumours. I chose to have a mastectomy because no one could give me any guarantees that there weren't any other tumors in there or that I would grow more. You have some difficult decisions to make but you need to make choices that you feel are right for you! There are two support groups on facebook that have lots of members and lots of information about all the different treatment options. Just search phyllodes and they should come up. I also have some written info that I can email to you if you want some more info. All the best. Cheers Katie.

  • katie76's avatar
    katie76
    Member
    13 years ago

    Hi Julia, sorry to hear you are going through all of this. I did not have a malignant tumour however my borderline tumour had either spread or I was growing a second one close to the original one. I had an mri but it was only a breast mri which showed no other tumours. I chose to have a mastectomy because no one could give me any guarantees that there weren't any other tumors in there or that I would grow more. You have some difficult decisions to make but you need to make choices that you feel are right for you! There are two support groups on facebook that have lots of members and lots of information about all the different treatment options. Just search phyllodes and they should come up. I also have some written info that I can email to you if you want some more info. All the best. Cheers Katie.