Phyllodes tumors

Hi goldengirl33.  I've been exactly where you are and through the same emotional rollercoaster.  Two years down the road, I can tell you that there is life after phyllodes.  There is a risk of the tumor coming back after it is removed - but that risk is only about 10% for a benign tumour.  That means that about 90% of patients who have had a benign phyllodes removed never have another problem.  There is also a risk that it can come back malignant - but that is an even smaller risk.  The main thing is that you need to make sure that the tumor is removed with wide (1cm) margins - this is the thing which reduces the risk of it coming back as much as possible.  Once it has been removed with wide margins, you will need follow up just to keep an eye on you to make sure that if it did come back it is picked up early.  But really, the likelihood is that you will be just fine.  Please consider joining 'Phyllodes Support Group' on facebook where there are over 400 phyllodes survivors who understand exactly how you feel.

I was just diagnosed this week following a needle biopsy and now researching as much as possible. I have a surgical consult next week. This has happened so fast it's daunting and nerve wracking. Staying positive as best as possible. Any advice?

I was diagnosed with a benign phyllodes tumor after a routine mammo showed a mass and a core needle biopsy came back as a benign PT. i was referred to a surgeon who recommended an excisional biopsy with 2-3 mm margins. Everything I have read about this kind of lesion recommends removal with at least 1 cm margins. When I questioned my surgeon about this, she said she would be happy to take that much tissue if it would make me feel better, but she thought that requiring a 1 cm margin for this type of tumor was "old thinking." I would be happy to have less healthy tissue removed, but am concerned about recurrence. Is this really old thinking? Any help would be appreciated. Surgery with wire localization is scheduled for day after tomorrow.

Was diagnosed with mid grade phyllodes tumors in 2008. Had lumpectomy in August.. Then partial mastectomy in October..( got pneumonia in between so delayed second surgery) up until recently I've had no problems.. Recovery was easy.. No issues till recently.. Just yesterday was diagnosed with 8cm breast mass in each breast.. They suspect inflammatory breast cancer.. So far I've found NO connection between the two types..( well except my breast..ugh) I'm much more nervous this go around.. Whatever is in my breast is very painful.. I go the 20th for ultrasound.. And 23rd to see surgeon..the lumpectomy to remove 8cm mass in right breast.( the breast I had phyllodes in) might as well be full mastectomy as there isn't much left from last surgery..

That's so great to hear i had 6 phyllodes tumors removed 2 attached making four spots removed with 3mm margins and one already grew back but spread to under arm, pissed is an understatement. I had tons of top docs swear for the last two years a fibroid. Waiting for my surgeon to get back from vacation to find next step.

Im glad everything worked out the way it did for you! I figured I would share my experience.

My name is Trisha, I am 23 years old and I was diagnosed with breast cancer April 2012. I found a lump under my right breast. Right where the breast meets your side, that crease. It was a painful lump and I put it off until I couldn't really rest my arm down. I went to the OB GYN and they dismissed me because I just got off the depo shot (birth control). The doctor ruled it out as breast tenderness because my menstral cycle was out of wack and he didnt do a breast exam at all and sent me home. I went three more days then went to my family doctor. She immediately set me up for an ultrasound and a mammogram. After I had the tests my doctor sent me to a breast surgeon. The breast sugeon set me up for a biopsy and after the biopsy she told me not to worry, it looks like an inflamed lymph node (as I was at the sugeons office with my whole family). I went home was relieved over the weekend and was back in the office Monday morning. I went by myself because I wasn't worried at all after the doctor told me what she thought it was. The first thing she said was where is the rest of your family and I said their all working and I should have known something was wrong. She told me that the lump they took a biopsy on was actually a Phyllodes Tumor and it was indeed malignant. First off, the rarity of a Phyllodes tumor when it is benign is small enough but for one to actually be malignant is even more rare. My surgeon said I am so sorry I didnt think this was cancerous and I have honestly never seen this type of cancer in my career. So, that being said I moved on to the Cancer Treatment Centers of America where I recieve care. The only thing I had done so far was a partial mastectomy and I am under close watch for the rest of my life. I recieve PET scans, CAT scans with dye, Ultrasounds, and Mammograms every three-four months. They said the only way I would get radiation would be if the tumor grew back in the same breast. Its kind of unbelieveable that something this rare could happen to you. Like I said I am 23 and every doctor I have been to is blown away and they say that this normally pops up in women 40 or older.

I know I'm late to this topic but I had my first encounter with a phyolldes tumor when I was 19. Initial biopsy said benign and by the time I had my lumpectomy, a week later they called me back because it was in the stage of turning malignant. So they had me come back to cut around the margins 6 mths later I had 4 more masses in my breasts (2 of each side) that I could feel. Instead of biopsies I did a double bilateral mastectomy 6 months later (since I had school) so did the bilateral double mastectomy at age 20 and had tissue expanders and did breast reconstruction at age 21. Now I'm 23.

My doctor was a but shocked I had phyolldes at age 19. I think she said I was either the youngest or one of the very few she met so young with a phyolldes tumor. I didn't have a family history or anything.

In the end my path results showed I had phyllodes, cyst and something called, Atypical ductal hyperplasia (ADH) which isn't a breast cancer. But, a marker for women who may have a risk factor for developing breast cancer.

@TamB71 - Good luck! Phyyllodes are usually big in size..when I had my first one removed i was told it was the size of a golf ball.

Hi Ukwales95, and welcome! You have joined a group of kind and knowledgeable individuals here at BCO.

This topic is quite old, so we are suggesting that you start a new topic with your question in order to get more feedback. Under this same forum https://community.breastcancer.org/forum/137 click the "Start a new Topic" button to begin writing. When you are ready to post your new Topic, click "Submit".

Good luck! Let us know if you need any help with that.

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