What is a Phyllodes Tumor?

A cystosarcoma phyllodes or phyllodes tumor is a rare form of tumor occurring in the breast, or even more rarely occurring in the prostate gland. Most often the phyllodes tumor is associated with breast cancer, though many of these tumors are not cancers. They may be benign, but they have a quick growth rate, which means that if ignored they can grow large enough to need removal by mastectomy.

Phyllodes tumors tend to invade the connective tissue of the breast, but they don’t usually occur in the ducts of the breast. They are most likely to develop in women who have not yet reached menopause, with the most phyllodes tumors noted in women between the ages of 40-50. A much younger woman can have one of these tumors, and cases have occurred in teenage girls, though this is rarer. What is often most apparent about these tumors is they can change in size quickly, and it’s not uncommon for growth to be noticeable and for these tumors to become very large in a matter of weeks or months.

There is differing information on whether a phyllodes tumor is likely to be cancerous. Some sources like the Merck Manual cite that approximately 50% of these tumors are malignant. Other equally reputable sources claim that about 80% are benign. It does seem that there are a high rate of benign phyllodes tumor cases, and that the higher estimate of noncancerous forms may be more accurate.


If a phyllodes tumor is suspected, women will typically need to undergo a needle or open surgical biopsy. This helps test the tumor for possible malignancy, and it may be then be considered benign, borderline or malignant. This rating determines treatment. Cancerous (malignant) tumors, and borderline ones might mean undergoing chemotherapy or radiation after mastectomy. Benign tumors still need to be removed. If the benign tumor is caught early, removal may be done in the form of a lumpectomy, but if the tumor is malignant or borderline, lumpectomies tend not to be preferable. About 20% of women will have a recurrence of the Phyllodes tumor.

These tumors are exceptionally rare, and account for only 1% of all breast cancer cases. They are even more rare when they occur in the prostate gland and like the breast type, they can be either malignant or benign. Unfortunately, the phyllodes tumor of the prostate can get even larger than those in the breasts before they’re noticed, since this isn’t an area of the body that men can check by themselves for evidence of lumps or tumors. As with treatment when such tumors occur in the breast, it’s recommended that those occurring in the prostate be removed immediately and checked for potential malignancy.


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Post 18

In early April 2013, I had a phyllode tumor removed. It was benign, and now two weeks later, the surgeon wants to remove more because he says it could grow back. I asked the surgeon if it would spread to other breast and he said they are not that kind of tumor. I was happy because the tumor was benign, but I am still worried! I don't understand this.

Post 17

I'm 21 and am waiting for results on a core biopsy on my second breast lump. Last year they removed what I'd been told was a fibroadenoma but what they found was a borderline phyllodes in my right breast.

Now this new lump is in my left breast. I'm so worried this is going to keep happening, with surgery every few years and more pain, stress and scars.

My 24 year old cousin is also having a phyllodes removed. Anyone know if these lumps are genetic?

Post 16

I am 17 years old and I recently had one taken out.

I am scared out of my mind for the fear that is may come back. What is the likelihood this will happen?

Post 15

I was diagnosed with a lump in my left breast a week before I had it removed by my surgeon a couple of weeks ago. He thought that it was a fibroadenoma.

I hardly felt any kind of pain after surgery and it was diagnosed to be a benign phyllode. The surgeon told me to palpate my breasts every two or three weeks since a second recurrence is possible. I'm 22 years old and I am afraid because I've read somewhere that a benign form of phyllode is a form of breast cancer and it has the potential to become malignant. Somebody, reassure me please.

Post 14

my 14 year old daughter had a benign phyllodes tumor 6cm long removed six weeks ago from her left breast. yesterday she asked me to check her as she thinks it has come back. i think it has come back. Has anyone had a recurrence? if so please let me know what happens now.

Post 13

In Feb 2010 I found out that I had a phyllodes tumor in my right breast that was the size of a golf ball. In March of 2010 I had a double mastectomy. I was told that I had tumors in both breast but the left breast tumors were benign and the right breast tumors were malignant. After a lot of research I decided to go ahead with the double mastectomy. two week after surgery I got a letter from breast clinic saying that the tumors in my left breast were malignant as well!

That's why we have to allow the Holy Ghost to lead and guide us in these important decisions. As of now I'm still cancer free and I have be seen at the cancer center every six months for check ups. I give God all the glory!

Post 12

I am 37 years old. In March I found my 2cm left breast tumor which was diagnosed as a Phyllodes tumor. I’m scheduled for wide excision next week. Follow up is a mammogram every six months.

What I have heard about this rare tumor has made me seriously consider a nipple sparing double mastectomy. I have four children, ages 15, 13, 10 and 2 years old! I will wait to see if this tumor is malignant before finalizing my decision.

My tumor seems to have doubled in size since the beginning of March but my surgeon feels this is as a result of the needle biopsy causing blood to encircle the tumor. If this is, in fact, growth, would this indicate malignancy?

Post 11

I have just been diagnosed with a malignant phyllodes tumour. Originally it was suspected to be benign, based on the core biopsy, but when I had it removed the results showed it was malignant.

The operation was very quick and trouble-free. I now have to go back to get larger margins.

I am going to avoid a mastectomy as long as can. I will have to monitor the situation and have regular check-ups every three to six months.

Post 10

I was diagnosed with a borderline phyllodes tumor on my right breast and had a lumpectomy done in October 2010. They now want to do surgery again, to get larger margins. I am now moving forward with a mastectomy on the right breast, given that it is a very rare tumor and may occur, I don't want to take any chances.

Post 9

I had a tumour removed last month and was told it was a malignant phyllodes tumour. It had grown to 5 cm. They now want to do surgery again to achieve the proper margins.

I am seriously considering a mastectomy so that this doesn't happen again and that I have to always live with the unknown. Any reading that I am doing suggests this would prevent this from happening.

Has anyone considered doing this instead of doing surgery after surgery?

Post 8

I had a Phyllodes tumour (5cm in left breast)) removed in 2006. I had a biopsy first and was told it was benign but on removal it was borderline (6 count). Because it was first thought benign, no margins were taken. It was also of the "pushing" type, does not infiltrate the tissue. The other type is "Infiltrating".

Four years on exactly and I've just been told that something is showing up on mammogram in same area. I have got a breast scan in a couple of days.

Maybe this time clear margins may have to be taken. I was told a mastectomy is a drastic step to take and not necessary, provided recurrence doesn't happen too often and there is enough tissue to take some margins.

Deep down I am devastated that it has possibly come back after all this time.

Search online. There are more people out there with the same and who can help.

Post 7

I was diagnosed with a benign phyllodes tumor after having surgical biopsy to remove the lump I had found in my left breast.

The surgery was very quick, simple, and I was hardly in any pain or discomfort after, but after the surgery and diagnosis I will be undergoing a second surgery to make margins to ensure no future regrowth and possibly a mastectomy, depending on what growth we are looking at while I recover from the first surgery.

The incision the first time around was made around my left nipple and now, a week and a half later is hardly visible. I was wondering if anyone knows the chances I will actually have to have a mastectomy?

I'm 19 and would really like to avoid this extreme, but my surgeon insists regrowth would be cancerous.

Post 6

I was diagnosed with phyllodes tumors about a year ago. The tumor they removed during surgery was about 13 cm, which is quite large. It was in my left breast as well.

The surgeon didn't feel that it was necessary to go back in and remove the marginal tissue and just like clock work they came back. I have have a tumor in the exact same place as before along with two others my left breast is now almost 4X the size of my right breast.

I have spoken to oncologists, gynecologists, and breast specialists and they say that the best way to assure the tumors will never come back is to get a mastectomy.

I am 21 years old

so a mastectomy isn't something that I want to get, but with the recurrence being within a year of my first surgery, I'm not going to get a surgery a year for the rest of my life.

My consultation is on Tuesday for my mastectomy and the surgeon who is performing the mastectomy said that he recommends mastectomy for the large phyllodes tumors and lumpectomies (with removal of tissue within margins) for all cases of phyllodes tumors.

He also said that because of my overall good health and my young age that he will be able to perform reconstruction at the same time, which is something that I would consider looking into if you decide to go the mastectomy route.

Post 5

I have had a lumpectomy and then they discovered it was a benign phyllodes tumour so it was recommended I had a second operation to gain clear margins as this is important to reduce the chances of it coming back.

In the meantime, another tumour came up on the other side so they removed this also in the second operation with wide margins - it was just as well because this turned out to be a benign phyllodes as well.

Just been to see the consultant and he says I am a very rare case because while I was asleep in the second operation, they found a third lump which was very small so they took that and it was a third benign phyllodes - all in the space of four months!

Post 4

I had a phyllodes tumor removed from my left breast three years ago. In February 2009, I had my annual mamo and everything was fine. In May as part of my annual physical, my doctor found a lump on my right breast. Since I just had the mamo done, we did not do anything about it. Between May and November, I could easily tell that the tumor was growing. In November I went for another mamo and ultrasound and it showed that he tumor was 3cm. I had a biopsy done and it came back as a fibroadenoma.

I went to see the surgeon that removed the other tumor and she thinks that the tumor is a phyllodes tumor due

to the rapid growth. She recommended that I have it removed. Once it is removed if the lab results confirms that it is a phyllodes tumor, I will need to have surgery again to remove more tissue around the tumor area to prevent any re-growth.
Post 3

i just find out i have phyllodes and benign on my left breast. Here is the thing: i have not ever had surgery for anything. if anyone has any other info please let me know. thanks.

Post 1

I just had a tumor removed last week and was told it was a phyllodes and benign. I have been advised to have a mammogram every six months. Also I have heard phyllodes tumors usually occur in the left breast.

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