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What is a Phylloides or Phyllodes Tumor?

Updated on January 15, 2017

What is it?

A phylloides or phyllodes tumor is a fast-growing, leaf-like tumor that occurs in the connective tissue of the breast. It can be benign, borderline (or pre-cancerous) or malignant. When developed into cancer, it is different from what you typically define as breast cancer, since it does not affect the lymph nodes, does not occur in stages, and is therefore considered a sarcoma. Because of this, it is harder to treat beyond a recommended mastectomy for recurring tumors. It does not respond to radiation or chemotherapy once metastasized.

Who's at Risk?

Women (and occasionally men) can develop a phylloides tumor, but it remains of unknown cause. Of all those who develop tumors, only around 1% are phylloides tumors, and over 80% are usually benign. However, this has been something occurring more in the past decade, with malignancy rates increasing.

I personally had a borderline (but mainly benign) phylloides tumor removed January 2009 and was only 29 at the time. It was a complete surprise to my doctor, and she mentioned only seeing a couple people a year who have had this kind of tumor, because it is so rare. In 2012, I went on to have another PT, only this time it was bilateral (in the other breast) and went undetected, so that it was larger than the first one. It was also benign, and was removed through a lumpectomy. I have since met several women who are both younger and older than me, so you can never be too careful in suspecting a phylloides tumor or recurrence. Clearly, more research is needed to address the lack of knowledge in understanding more about Phylloides.

What to Look For

Upon doing a breast self-exam, you will find that the breast tissue varies, often lumpy in areas or having the appearance of grains of sand. Breast lumps themselves are not always serious, as they can be due to hormonal changes, and disappear on their own. Regular self-exams are very important in determining any changes you might see or feel on your breasts.

If you find a lump, don’t panic! However, it is always wise to schedule an appointment with your doctor for further review. He or she will ask if you've ever had lumps before, if you have a family history of breast cancer, or if you've noticed any pain, itchiness, or other changes in your breasts. Generally speaking, a lump that moves easy to the touch is less likely to be phylloides (but don't rule them out). Malignant tumors of any type tend to be nonmoving.

Symptoms of cancerous tumors but may not all be present other than a fast-growing lump, but may also include:

  • change in breast size
  • translucent or waxy-looking skin where the lump is located
  • lump is warm to the touch

Getting a Diagnosis

Depending on your age, you might be asked to wait a cycle to see if the lump disappears after menstruation. If that is the case, a cyst would be suspected. If the lump recurs, it is often considered fibrocystic breast disease, or chronically lumpy breasts. A large cyst can be drained to minimize discomfort.

If you are over 30, have a family history of breast cancer, have ever had breast surgeries, or if the lump continues to grow, an ultrasound or mammogram will be recommended. Cysts show up as clear masses, while tumors are solid. Generally-speaking, benign tumors are round, without "roots" attaching to surrounding tissue, and are easily removed. As tumors start to change to oval and star, they are more likely borderline or malignant.

When a tumor is suspected, a needle (core) biopsy or surgical biopsy (excision) is advised to determine if the tumor is benign or malignant. Unfortunately, phylloides tumors are never detected with an ultrasound or mammogram, because they closely resemble another type of benign tumor known as a fibroadenoma. A needle biopsy will also miss whether or not the tumor is phylloides. Only a full removal of the tumor through surgery will provide pathologists with a clear view of its leaf-like shape. The danger of doing a needle biopsy when the tumor is unknowingly a phylloides is that the tumor will continue to grow. The longer a phylloides tumor grows, the greater its chance of developing malignancy. However, surgery is only recommended when a tumor reaches 3 centimeters, unless you have a history of phylloides already, or if you are in any discomfort. An evaluation with a breast surgeon will take place first, followed by the scheduling of your needle biopsy or surgery.

The Procedure for Removal

Surgery is an outpatient procedure, lasting around 45 minutes. Patients are prepped up to 2 hours beforehand. General anesthesia is administered and a small incision is made around the areola. Recovery time is within two weeks, with no lifting or repetitive motions with your arms for at least a week to allow the stitches to heal. Pathology results are received within a week, followed by a post-op appointment with the doctor. If a phylloides tumor is diagnosed, a second surgery identical to the first is required to remove 1 to 2 centimeters of surrounding tissue to be biopsied, so that clear margins are obtained. Otherwise, any fragments left over of the phylloides can grow into tumors again, or be possibly borderline or malignant.

What to Expect After Phylloides

Further testing and procedures vary depending on whether your tumor is benign, borderline, or malignant. With benign or borderline phylloides tumors, the doctor will recommend 6 month mammograms for 1-2 years, eventually going to yearly. Standard or diagnostic mammograms will be administered, most likely with a same-day request for surgeon's review attached. Recurring tumors are rare the longer it's been since the presence of an initial phylloides tumor, but occurrences can't be ruled out. Any phylloides tumor left undetected has the potential to become malignant. Aggressive in nature, malignant tumors require frequent monitoring, and ultimately a mastectomy, in an effort to prevent cancerous cells from metastasizing.

Tips and Advice

  • Listen to your body. If you are feeling like something isn't quite right, or if a breast lump is troubling you, err on the side of caution and make an appointment with your doctor. Don't let a doctor ever tell you that you are too young for tumors or cancer! Get a second opinion if necessary.
  • Don't be alarmed if you are facing a biopsy. Just be sure you are referred to a good breast surgeon who is knowledgeable in phylloides.
  • If you are diagnosed with a phylloides tumor, join online support groups and forums and read up on the subject so that you can know as much as you can about what to expect.
  • Don't be afraid to ask your doctor questions.

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