phylloid tumor

vlennon Member Posts: 3
edited March 2014 in Breast Cancer #1
Just trying to find someone that has had the same type of cancer as myself. High grade malignant tumor. Feel alone, even with family and friends. Also looking to see if there is any more new information out there on this tumor.


  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    you're not alone!
    I've read posts on here with women who have this type of cancer.

    It's back a couple of pages.

    Welcome to the site, vlennon, although I'm sorry why you're here.

    You're not alone and others will be responding soon.

    I'll try to find the other phylloid tumor thread and bump it up for you.

  • cheyennedawn
    cheyennedawn Member Posts: 70
    Welcome to the site, but I am sorry that you had the diagnosis that got you here. I was diagnosed with a borderline malignant phyllodes tumor and had a mastectomy on August 12, 2009 to remove it. They also removed 20 lymph nodes, and they all were clear. I guess because of that, I did not have to have chemo or radiation treatment. I have a chest ct scan tomorrow, but it was because I was insistant that it be done, not because my surgeon recommended it. Actually, it was the opposite. I had to go to my primary care physican, and she was the one that set it up for me. There is so little information out there on this disease, not alot known about it. I have only met a couple of women on this site that have the same dx. Because it is so rare, there really is no standard treatment for it. When were you diagnosed with this, and what treatment, if any, are you doing? Does your doctor recommend a mastectomy? Lumpectomy? I actually had a partial mastectomy first, then the pathology came back that some of the tumor was left in the breast, that was followed by a mastectomy. I will try to find some more info for you, and when I do, I will post it here. As I have learned from the women on this site is to be very persistant and proactive in your care. Ask questions, take someone with you to all drs appointments, and have them write down everything. You won't remember later on, or I didn't anyway. I know this is very scary. Just hang in there, and keep searching for answers. Maybe get a second opinion.

  • cheyennedawn
    cheyennedawn Member Posts: 70
    Here is some info. Not
    Here is some info. Not much, but maybe give you a better idea. Will keep looking for you:
    Breast Care
    Breast Disorders
    Phyllodes Tumor
    Phyllodes tumors are rare solid lumps that usually present as a mass found during a woman’s breast self-examination or on a routine physical examination. Smaller masses may be detected mammographically. Phyllodes tumors appear very similar to a benign lump known as a fibroadenoma. These lumps are usually well circumscribed and painless. Imaging evaluation including a mammogram and ultrasound is usually performed and when a solid lump is identified a biopsy is important to obtain tissue for accurate diagnosis. A phyllodes tumor cannot be differentiated from a fibroadenoma by a needle biopsy. This means that your doctor may not be able to accurately tell you whether a solid lump is a benign fibroadenoma or a phyllodes tumor. Risk factors for phyllodes tumor are rapid growth and size greater than 2 cms at the time of the evaluation. In many cases your doctor may recommend complete surgical removal of this mass to ensure that it is not an underlying phyllodes tumor.

    Phyllodes tumors are not all cancerous. Many will be classified as benign and not require further evaluation. A skilled pathologist is needed to distinguish a benign phyllodes tumor from one with more aggressive malignant potential. In any event, women who undergo surgery for removal of a phyllodes tumor require close surveillance with followup mammogram and physical examination at regular intervals. Malignant phyllodes tumors are best managed with a wide excision of normal breast tissue around the tumor to obtain clean margins. In most cases, radiation therapy is not required. Very large malignant phyllodes tumors may require complete removal of the breast for management.

    MedHelp Member's Question
    phyllodes tumors
    by Rayne, Aug 15, 2004 12:00AM
    Tags: tumors, breast, Cancer, breast cancer, benign, borderline, malignant, mastectomy, metastases, treatment
    I am 20 years old and recently had a breast biopsy where they removed a lumpLumps in the breasts that turned out to be a phyllodes tumor. My surgeon informed me that it fell in the classification of being "borderlineBorderline personality disorder". I'm confused as to what borderlineBorderline personality disorder is. I've seen some web sited say it is grouped with the benignBenign ear cyst or tumor
    Benign positional vertigo tumors, and then some say it is grouped with the malignantCancer
    Gestational trophoblastic disease
    Lymphoma, malignant - ct scan
    Malignant melanoma
    Malignant otitis externa
    Melanoma of the eye
    Multiple myeloma
    Skin cancer, malignant melanoma tumors. So which is it ? I am very confused. ..Doctor's Answer
    by CCF-RN,MSN-rf, Aug 16, 2004 12:00AM
    Dear Rayne: Phyllodes tumors are not staged in the same manner as breast cancer. The following information regarding phyllodes tumor is directly from the textbook �Cancer: Principles and Practice of Oncology� 6th edition, edited by DeVita,V., Hellman,S., and Rosenberg, S. I hope it is of some help to you. Beyond this, in terms of your individual case, you would need to discuss any additional interpretations with your physician.

    �The term phyllodes tumor includes a group of lesions of varying malignantCancer
    Gestational trophoblastic disease
    Lymphoma, malignant - ct scan
    Malignant melanoma
    Malignant otitis externa
    Melanoma of the eye
    Multiple myeloma
    Skin cancer, malignant melanoma potential ranging from completely benign (non-cancerous) to fully malignant sarcomas.

    Phyllodes tumors are classified as benign, borderline, or malignant based on the nature of the tumor margins (pushing or infiltrative) and presence of cellular atypia, mitotic activity, and overgrowth in the stroma. There is disagreement about which of these criteria is most important, although most experts favor stromal overgrowth. The percentage of phyllodes tumors classified as malignant ranges from 23% to 50%. Axillary metastases are reported in less than 5% of cases, but are a poor prognostic sign when present. Metastases more commonly follow the pattern seen with sarcomas (with lung as the most common site) and histologically resemble sarcomas. Approximately 20% of phyllodes tumors recur locally if excised with no margin or a margin of a few millimeters of normal breast tissue, regardless of whether they are benign or malignant. A wide excision with a 2cm margin of normal breast tissue is appropriate therapy for benign and borderline phyllodes tumors unless they are so large that this is not cosmetically feasible. In the past, many authors have advocated mastectomy for the management of malignant phyllodes tumors. Since phyllodes tumors are not multicentric, there is no clear-cut biologic rationale for mastectomy, and series have reported the successful treatment of malignant phyllodes tumors with wide excision. The use of systemic therapy for malignant phyllodes tumors is based on guidelines for treating sarcomas.�

    Part of the reason for removing the tumor is to examine it more carefully to discover if it is benign, borderline or if it has any malignant features. The treatment, regardless, is surgery with wide excision.
  • expresslove
    expresslove Member Posts: 19
    I'll help u! :D
    Hi. I too have been recently diagnosed (last week) with a malignant phyllodes tumor so I can try and help you as much as I can. I am also doing a whole lot of learning about what is going on with me. I also asked about more information but there isn’t a lot of information online because it is pretty rare. I would ask as many questions for your doctor. If you are like me and freeze up, write them before you go to a consultation and bring someone else. You cant be afraid to ask questions. So far I have gone through a lumpectomy, and about to have another surgery next week.
    I am pretty new to the site too, but I know there are at least two other posts about this type of tumor. There one post from me, and one from another person. Type in phyolldes tumor in the search, and I think you should be able to find it.
    Be strong and keep on smiling!