Phyllodes are a rare type of tumour found in the breast.
They are sometimes referred to as cystosarcoma or cystosarcoma phyllodes.
Phyllodes are most commonly found in pre-menopausal women aged between 40 and 50 but can occur in women of any age. They can also occasionally occur in men.
There are three types of phyllodes tumour:
- Benign – 50–60% of phyllodes are non-cancerous
- Borderline – these are phyllodes where the cells it’s made up of are too abnormal to be benign but may not be cancerous either
- Malignant – between 20–25% of phyllodes are cancerous
Malignant phyllodes are more similar to soft tissue sarcoma than they are to other breast cancers. Unlike other breast cancers, which occur in the milk ducts and the milk glands, soft tissue sarcoma like phyllodes develop in the connective tissues, such as fat or muscle.
Statistics
There an average of 58 cases of phyllodes tumour diagnosed every year in England.
The median age at diagnosis is 56 years old.
For more information on these statistics, you can visit our soft tissue sarcoma data hub.
Signs and symptoms
Phyllodes can appear as:
- a smooth, hard lump
- a lump which grows quickly over weeks or months
- a bulge
- an abnormal mass on a breast screen
In rare cases, phyllodes can grow through the top layer of skin and develop into an ulcer.
Diagnosis
Phyllodes are rare and can often look similar to other tumours. This makes diagnosing phyllodes difficult.
Diagnosis can happen in different ways. GPs and breast screening teams who suspect an abnormal growth will refer to a breast clinic for further tests.
It may also be diagnosed following surgery, when the tumour can be studied more closely by pathologists.
It’s recommended that suspected breast cancer is investigated using three tests. However, not all of these will always be needed. The three tests are:
- Physical examination
- Scan (mammogram or ultrasound)
- Biopsy
To read more about scans and tests, click here.
Treatment
Surgery
Surgery is the main treatment for phyllodes tumours whether benign, borderline or malignant. In most cases, breast conserving surgery or a lumpectomy is carried out. This is the removal of the tumour without removing the entire breast. To prevent the tumour returning, the surgeon will also aim to take out an area of normal tissue around it, which is known as taking a surgical margin. In phyllodes tumours, a wide margin of more than 1cm has been found to be the most effective in preventing a tumour returning. Lymph nodes do not commonly need to be removed, as they might in other breast cancers.
There are some instances where the surgical team may feel a mastectomy is required. A mastectomy is where all breast tissue from a breast is removed. This may be needed in cases of a particularly large or aggressive tumour.
If surgery is likely to result in significant cosmetic changes, your breast team
will talk to you about options including reconstruction and prosthesis. Immediate reconstruction is where reconstruction is carried out during the initial operation. Delayed reconstruction is where it occurs months or years later.
Radiotherapy
This treatment uses high-energy radiation beams to destroy cancer cells. Radiotherapy is sometimes used after the surgical removal of borderline or malignant phyllodes tumours. The aim of radiotherapy is to kill off any local cancer cells which remain in the area around the tumour.
The rarity of phyllodes tumours means that there is very little evidence as to whether radiotherapy is needed after surgery or not. It is therefore less likely to be used routinely but may be used in cases where a tumour is particularly aggressive, or where they have not been able to remove it with wide surgical margins.
It is better to avoid any potential side effects of radiotherapy if the benefit of the treatment is likely to be very small or none at all. Your medical team will be able to discuss this in more detail when they have all the information available after surgery.
Chemotherapy
Chemotherapy uses drugs to kill cancer cells or control cancer growth. It is not routinely used in the treatment of phyllodes. However, it may be used if a phyllodes tumour has spread to other parts of the body.
Hormone treatment
Current hormone treatments are not effective in the control of phyllodes. Breast cancer cells often have hormone receptors (proteins) and when hormones and other proteins attach to these, this helps the cancer to grow. Hormone therapy works by stopping these hormones from attaching to these receptors. Phyllodes have been shown to have hormone receptors but they do not respond in the same way to this type of therapy. More research is needed in this area.
After treatment
After treatment, you will have regular follow-up appointments for several years. You should receive a follow-up schedule from your sarcoma clinical nurse specialist. The usual practice will include:
- A chance to discuss symptoms
- An examination to look for any signs of the phyllodes returning
- A chest x-ray to rule out any secondary cancers occurring in the lungs
Living with
What if my phyllodes comes back?
Phyllodes tumours can sometimes come back in the same area where a previous tumour has been removed. This is called a local recurrence. Recurrence is much less likely when surgery has involved wide surgical margins.
It is useful to check your body and highlight any changes through self-examination. If you are worried that your tumour has recurred, contact your doctor or clinical nurse specialist. They may decide to bring forward the date of your follow up appointment to investigate your concerns.
What if my cancer spreads to another part of my body?
There are cases in which malignant phyllodes spread to other parts of the body. This is described as metastases or secondary cancer. Treatment for secondary cancers may involve surgery, radiotherapy or chemotherapy as appropriate. Your treatment will be assessed on an individual basis.
Survival statistics
If you or a loved one has been diagnosed with sarcoma, you may be feeling scared and uncertain about the future. However, it’s important to remember that there is hope, and that many people with sarcoma are able to live long, fulfilling lives after their diagnosis.
Survival depends on a number of different factors. Doctors usually use large sets of data to determine the outlook for a particular type of cancer. However, sarcoma is rare, which means survival is harder to estimate than for other, more common cancers.
Here are some survival statistics for phyllodes tumour:
- 94% of females diagnosed with phyllodes tumour in England survive their disease for one year or more (2013-2017).
- 85% of females diagnosed with phyllodes tumour in England survive their disease for five years or more (2013-2017).
It’s important to keep in mind that survival rates are just one factor to consider when it comes to your prognosis. Your individual prognosis will depend on many factors, including your age, overall health, and the stage and grade of your cancer.
About these statistics
The terms 1 year survival and 5 year survival don’t mean that you will only live for 1 or 5 years.
The Office for National Statistics (ONS) and researchers collect information. They watch what happens to people with cancer in the years after their diagnosis. 5 years is a common time point to measure survival. But some people live much longer than this.
5 year survival is the number of people who have not died from their cancer within 5 years after diagnosis.
A phyllodes tumour can be mistaken for commonly occurring fibroadenomas, which are benign lumps occurring in milk glands. In many cases, they can behave in a similar way. However, phyllodes tend to grow quickly and are more common in women in their 40s and 50s. Fibroadenomas occurs more in women in their 20s and 30s.
