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What is a Phylloides or Phyllodes Tumor?

Natasha is a freelance writer and author who has been writing self-help articles for over 20 years.

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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 is 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 (3 centimeters in size) removed through surgery in 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 (at 5 centimeters). It was also benign, and was removed through a lumpectomy. In 2019, another growth was discovered and diagnosed to be a benign fibroadenoma (2 centimeters) via a needle biopsy. At my six-month check-up, it hadn't grown, so to-date no further action has been taken. There is always the chance it can turn into another PT, so annual mammograms will continue to be a must. I have met so many women over the years who are both younger and older than me, so you can never be too careful in suspecting a phylloides tumor or recurrences. Clearly, more research is needed to address the lack of knowledge in understanding more about Phylloides overall.

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 may not be present at all, other than a fast-growing lump, but you also experience:

  • 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, a phylloides tumor is difficult to detect with an ultrasound or mammogram, because it closely resembles a fibroadenoma. While a needle biopsy is quicker and less invasive, it can't always detect whether or not the tumor is phylloides. For many women, the preferred method is to have the tumor surgically removed, from which pathologists are given a clear view of the leaf-like shape of the tissue.

The danger of doing a needle biopsy when the tumor is unknowingly a phylloides is that the tumor will continue to grow, and the longer a phylloides tumor grows, the greater the chance of it becoming malignant. 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

A needle biopsy is an out-patient procedure that takes about 30-45 minutes. First, an ultrasound is performed to pinpoint the exact location of the tissue. Then, the area is numbed completely while the doctor makes a few small incisions to and inserts a needle to remove one or more samples of tissue. A wire marker is put in place to flag the tissue's location for future monitoring, and once the incision sites are cleaned and dressed, the patient will be given a baseline mammogram. To combat any soreness or bruising that may occur in the first 24-48 hours, an ice-pack and an over-the-counter pain medication are recommended. No heavy lifting for up to a week.

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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