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Topic: Newly Diagnosed Borderline Phyllodes Tumor

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Mar 2, 2020 03:26PM

CG2020 wrote:

Hi there... I was just recently diagnosed as having a borderline phyllodes tumor. Of course biopsy first showed benign. Had lumpectomy and pathology came back borderline. Can't really seem to figure out what "borderline" means? is it cancerous, it is not?

Anyway, now that they got that result back, they want to go back in and remove more tissue! Not to psyched about that! I am wondering if anyone that has had a borderline phyllode tumor opted for a mastectomy? I understand that these tumors can come back... I don't want to keep having surgeries/biopsies if I do not have to?

Any info you folks can provide would be greatly appreciated!!!

Thank you!

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Mar 2, 2020 03:47PM - edited Mar 2, 2020 03:47PM by Moderators


Welcome to the BCO community. We are sorry for what brings you here but we are so glad that you reached out to our members. There is another thread for those with Phyllodes Tumors that might be helpful or it might offer you some others to contact via private message. Let us know if we can be of help.

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Mar 2, 2020 07:27PM Beesy_The_Other_One wrote:


I was diagnosed with a borderline Phyllodes tumor in my right breast in 1997. At that time, standard of care was to do a wide excision, which meant it resulted in a ½ mastectomy. I've read in recent years that as long as the surgeon gets clear margins, they've found that taking the tumor is enough. If left untreated, even a benign Phyllodes tumor can overtake the breast because they can grow so fast and require a mastectomy because of the size alone. To answer your question about malignancy, my understanding is that phyllodes tumors are classified as benign, borderline or malignant, depending on how the cells look under the microscope. They are rare--MD Anderson in Houston only sees two cases a year.

In 2018, I was diagnosed with Invasive Ductal Carcinoma. At that point, I had a bilateral mastectomy and the same surgeon who did my phyllodes surgeries did that surgery. There were two because like you, they thought they were simply removing a giant fibroadenoma. I'm sure your surgeon would consider a mastectomy overkill, but I can't lie and say I haven't often wished I'd had them both taken off in 97.

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)

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