phyllodes tumor

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tutu07882
tutu07882 Member Posts: 1
edited March 2014 in Breast Cancer #1
I am looking for someone that has had a malignant phyllodes tumor. Had one removed 02/16/04. Interested in followup treatment.

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  • inkblot
    inkblot Member Posts: 698 Member
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    Hi tutu:

    There is some good info at: www.nci.nih.gov Just type phyllodes tumor (or its treatment) into the search box. You can also check out cancer.org

    I don't know anyone who has had this type of tumor, so don't know what the usual follow up may be, if any.

    Good luck and hope this helps.

    Love, light and laughter,
    Ink
  • tlmac
    tlmac Member Posts: 272 Member
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    All I know about Phyllodes tumors is what I've read but I'll share the info in case you might be interested. They don't respond to hormonal therapy and are less likely to respond to other breast cancer treatments such as chemotherapy or radiation therapy (in the breast area). Malignant phyllodes tumors are removed with a wide margin of healthy breast tissue, or by mastectomy. I believe the % of reoccurance for a malignant Phyllodes, at least at the time of the article I read, was slightly above 50%. I suppose that's why many choose mastectomy. There are also reports that radiation therapy has been used to successfully treat Phyllodes tumors that have metastasized to other parts of the body and can't be surgically removed. Hope this information helps. Good luck.
  • mrg613
    mrg613 Member Posts: 1
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    I also had a Phyllodes tumor -- mastectomy in Nov. from what I know tlmac has the right idea. I think the 50% recurrence rate that s/he quoted might be too high but unfortunately the truth is that there's a fair amt. of disagreement. Eur.ean and Amer. studies conflict (for ex., on radiation) and sometimes tremendously. In general, as cancers go, this isn't such a bad one to have. Of course it still sucks to have it and when did I ever tell anyone that I was interested in signing up for a mastectomy? ah well.
  • slovgirl
    slovgirl Member Posts: 1
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    phyllodes tumor diagnosis
    I am also looking for some help with follow up. I am 30 years old and was diagnosed with borderline malignant phyllodes tumor back in 2007. The breast specialist I was seeing gave me no instructions on what to do. He passed away shortly after my surgery. In 2010 I had another tumor removed and that doctor also gave me no instructions. He had no idea what a phyllodes tumor was. If anyone has any experience in borderline malignant tumors I would really appreciate the advice. What the heck does borderline even mean??

    I have been worried about this for years and have not been able to get any help at all. The family physicians I see are not familiar with the tumor and completely blow it off.

    I need some help, please!
  • kbsss
    kbsss Member Posts: 4
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    slovgirl said:

    phyllodes tumor diagnosis
    I am also looking for some help with follow up. I am 30 years old and was diagnosed with borderline malignant phyllodes tumor back in 2007. The breast specialist I was seeing gave me no instructions on what to do. He passed away shortly after my surgery. In 2010 I had another tumor removed and that doctor also gave me no instructions. He had no idea what a phyllodes tumor was. If anyone has any experience in borderline malignant tumors I would really appreciate the advice. What the heck does borderline even mean??

    I have been worried about this for years and have not been able to get any help at all. The family physicians I see are not familiar with the tumor and completely blow it off.

    I need some help, please!

    A "phyllodes tumor" is a
    A "phyllodes tumor" is a tumor derived from cells that support the tissue around the ducts or glands. These cells are called "stromal cells". There is a spectrum of tumors of the breast that are derived from stromal cells. They are: 1. fibroadenoma (completely benign) 2. borderline phyllodes tumor and 3. malignant phyllodes. A borderline phyllodes is diagnosed when the pathologist can not say for certain if a phyllodes tumor is outright malignant or benign because it may have characteristics of both. The best thing you can do now is try to find another breast surgeon or oncologist to take a look at your pathology reports and make sure that the tumor was completely and adequately removed with enough normal breast tissue surrounding it (this is called a surgical margin). Studies have shown that adequate excision is the best primary treatment for borderline phyllodes tumor. You need to find out if this tumor was adequately remove and also what the diagnosis of the second lesion was. Good luck.