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Phyllodes Tumor (Cystosarcoma Phyllodes)

Double Whammy by Barb N, July 2005

Join Barb on our Phyllodes Tumor Support Forums

I am a 57 year old, white female from the mid-west diagnosed with a malignant Phyllodes Tumor of high grade on February 9, 2005.  I had a complete mastectomy (no lymph nodes) of my right breast done on February 28, 2005.

When I was given the diagnosis I went off the deep end.  I searched and searched the internet to find info on this tumor and there was not much out there.  I cried and cried and cried and could not believe that I was going to die from this thing since it was high grade and recurs and metastasizes readily.  I contacted support groups in my area and was never able to find anyone that was even familiar with a Phyllodes Tumor much less knowing someone who had one.  They have a cancer liaison at the hospital where I had the surgery and she had never heard of it either. The nurses in the hospital and the nurses at my oncologists office and my regular doctor's office all had to be educated on this tumor also. I must have told my story a thousand times since February 9th.

My original biopsy done on February 7, 2005 stated that I had a Phyllodes Tumor of fairly high grade.  My pathology report from my mastectomy stated the following:

Gross Description: "A" is labeled "right breast" and consists of a simple mastectomy specimen measuring 22 x 20 x 6 cm in greatest dimension.  The attached ellipse of tan-white skin measures 18 x 10 cm.  The nipple is everted and mobile.  No definite scars are identified on the skin surface.  Serial sections through the specimen reveal yellow, lobulated fatty tissue with numerous large areas of tan-white fibrous bands.

Also present is a firm and well-circumscribed tan-pink mass measuring 2.5 x 2.0 x 1.6 cm in greatest dimension.  This mass is at last 2.5 cm from the deep margin.  There is a hemorrhagic area next to this nodule which most likely represents the previous biopsy site.  An additional well-circumscribed mass, 0.7 cm, is found approximately 6 cm from the first nodule.  Further sectioning reveals an additional well-circumscribed tan-white nodule also measuring 0.7 cm in greatest dimension.  This nodule is approximately 1 cm from the largest nodule.

Right breast, simple mastectomy
Malignant Phyllodes tumor (cystosarcoma Phyllodes, with predominantly low grade features (see comment)
Tumor measures 2.5 cm in greatest dimension
Deep margin is negative for tumor
Fibrocystic change with nodular sclerosing adenosis and fibroadenoma.

Comment: Although the stromal cellularity and atypia in some areas suggest a high grade malignant Phyllodes tumor, most histological features are those of a low-grade malignancy, including rare mitotic figures, alternating areas of hyprocellularity and a well circumscribed tumor border.  This lesion is also relatively small for a Phyllodes tumor.

On June 17, 2005 I went to see my oncologist for my 3 month check-up (chest x-ray and blood work) and my results were fine.  But when he did an aggressive physical exam he found a mass in my left breast.  Had mass removed 4 days later and results came back LCIS.  I have decided to have this breast removed also and will feel better when it is gone.  Now I live in fear until August 8th wondering if there are actual cancer cells in the breast and not just pre-cancer and dread what could be in store for me.

I am having a very difficult time in moving forward in my life with the Phyllodes results.  I live with the constant stress of it returning and spreading into other organs.  I can't seem to get past that - it's like waiting for the other shoe to drop.

The information available is so limited and I was never able to find one single person that had a malignant tumor or even a benign one.  I read alot of studies on the internet and actually sent for and paid for one that Mayo Clinic did.  All of the reports are very depressing with future outlooks are dismal for people like me with the high grade malignant one.

I am also angry that there is no help for women like us, no research being done to find a cure - nothing.  It is like we are not important enough to warrant any cancer research or time and money for us.  In the world we live in today there certainly should be something to help us out - no one cares to take the time. Evidently that's not where the glory is.

It is important to me to find other people in my circumstances.