Cystosarcoma Phyllodes

I was diagnosed with a very rare tumor referred to as Cystosarcoma Phyllodes. In January of 2009, just days after my 34th birthday, I found a very noticeable lump in my right breast. After an ultrasound, mammogram, and needle biopsy, I was told that this 2 cm tumor was nothing to worry about and that it was ok to leave it. By July, I felt this tumor getting bigger. After going to a breast cancer specialist, he informed that my 2 cm of "nothing" was now 7.2 cm. He introduced me to the term Phyllodes and explained that most doctors have never even heard of it and few  pathologists know how to recognize it. He explained that this tumor does not respond to chemo, radiation, or hormonal therapy and that surgery was our only option. Two surgeries later I was tumor-free. In 2011, my tumor returned, but after my third surgery  it was found to be benign this time. 

So what is it and how do you fix it? Well, nobody really knows. Here's what little is out there, as I include actual pictures of my mammograms and tumors that were removed:



Phyllodes tumor is a very rare type of breast tumor, which can be benign (harmless) or malignant (cancerous). This type of tumor is called a "sarcoma," because it occurs in the connective tissue (stroma) of your breast, rather than in epithelial tissue (lining of ducts and lobes). Phyllodes tumors account for less than 1% of all breast cancers. Even though the tumor may be benign, it is still considered a type of breast cancer, because it has the potential to become malignant. This type of breast tumor grows very fast — so much so that the lump can become bigger in a couple of weeks.

Stages of Phyllodes Tumor:

March 2011, recurrence

Most breast cancers are classified as stages 1 to 4, but that is not the case with Phyllodes tumor. After a surgical biopsy, the pathologist will study the cells under a microscope. Two characteristics are considered: the speed at which the cells are dividing and the number of irregularly shaped cells in the tissue sample. Depending on how the cells meet these criteria, the tumor is classed as benign (harmless), borderline or malignant (cancerous). 

Treatments for Phyllodes Tumor:

The clinical behavior for Phyllodes tumor is very unpredictable. They can metastasize by vascular spread, most commonly to the lung, pleura, and bone. This type of tumor does not respond well to radiation, chemotherapy or hormonal therapies. If your tumor is relatively small and benign, it may be removed with a lumpectomy. Large benign tumors may require a mastectomy, so as to remove both the tumor and a clean margin of breast tissue. Malignant tumors are removed with a wide local excision (WLE) or mastectomy to remove as much of the affected tissue as possible.

So now what?


Our follow-up plan has been a check-up every 6 months for 5 years. Tests range anywhere from an ultrasound to a mammogram, or a simple chest x-ray to ensure nothing has migrated to my chest and lungs. For some reason I made it a habit of checking myself. I had no clue what I was doing, but I knew right away when something felt wrong. Because I was persistent in seeking a second opinion, I was fortunate enough to find the best of the best, and my doctor knew exactly what he was dealing with from the start. It's my hope that everyone of any age will eventually know what's "normal" for you. Take care of your body, you only get one.

Trish Georges, Founder