Phyllodes Tumor - Benign

X2011skm. I am very surprised that the Dr. Told you that you have a phyllodes by only a ultrasound. I would not count on that. I found a lump 2weeks ago, went to OB on the Monday, mammo and ultrasound on the Tuesday, met with the surgeon on the Thursday of that first week, the second week I had a miraluma scan (nuclear) on the Tuesday pre-op on the Wednesday and excisional biopsy on Thursday last week. They told me it would probably be benign. I got my results today and it was a benign 2cm phyllodes tumor. The only reason I can see why they think it may be a phyllodes is that maybe it isn't symmetrical. Usually fibroadenomas are almost perfectly oval. What type of biopsy are you having? I would insist on excisional because they would remove it which will have to be done anyway. The information I have found says that they grow fast and even if they are malignant it has to be removed. Chemo and radiation will not cure it. I feel and hope that it is just a fibroadenoma that you have. BTW I am 42 yrs. and as you say phyllodes are already rare but in an 18 yr. old i think even rarer. These usually hit women 40-50 yr olds. Surgery wasn't too bad, I have a 4 inch incision because he took out surrounding tissue, swelling and bruising but I hear from others that have had both needle biopsy and lumpectomy (excisional) and I hear the needle biopsy hurts more! Good luck! P.S I am only four days post-op

Hi msieaj!

I am 28 years old and recently found a lump in my right breast. I went in for a check up early April. They suggested getting a MRI done. They couldn't determine what the lump was....so I had a core biopsy done about 2 weeks later at the end of April. They determined it was a Phyllod tumor (about 1.7 cm) I can reassure you, you are not over reacting. I have a 7 year old daughter to care for, and my only worry is what will happen to her if this turns for the worse. The radiologist suggest that it should be removed. I was referred to a doctor at our local cancer center. My appointment is next week (5/15/13) and I'm curious to see what the doctor has to say. I've read all the blogs here and everything I've reaearched is basically everything I've read here on this forum. I will keep everyone posted as to what other things I've learned and incountered.

I'm curious to know how everything is going with you though? Hope all is well and looking positive for all!

Anniewill I have a story really similar to yours.

In November of 2011 I was doing a self breast exam (I had just turned 21 and was in nursing school and we had just gone over in class how important they are so I decided to go home and do one ironically) and felt this weird lump in my left breast.  I was so busy with school at the time I just went into the philosophy of I'm sure it's nothing and I'll deal with it over Christmas break. So jumpt to Christmas break and I go in for an exam and my primary doctor ordered and ultrasound and referred me to a breast surgeon.

About a week later I went in for the ultrasound and sure enough a tumor popped up on the screen.  The tech performing the ultrasound didn't have to say anything because the minute I saw her face I knew it wasn't a cyst etc.  After the ultrasound I immediately started researching tumors.  I don't remember how I came across reading about the rare phyllodes tumor but I remember the minute I saw it I got the strangest gut feeling that was the type of tumor I had. 

I took my results to the breast surgeon I had been referred to and he 99% guaranteed it was a fibroadenoma based on my age and the tumor's characteristics. I brought up that I had found information on phyllodes tumor and he immediately shot down even a remote possibility that it could be one.  Rule #1 in the medical field- don't give any false reassurance.  Anniewill, like you I was given the options of just wait and get yearly ultrasounds to make sure it doesn't grow like crazy since fibroadenomas aren't very dangerous, get a biopsy, or have it removed.  Based on my family history of cancers our motto has come to be "If in doubt, take it out."  Cheesy I know ha.  My surgeon thought I too was overreacting but he's not the one who had to go to sleep at night wondering if it was definitely a fibroadenoma or something potentially much scarier.

About two weeks later I went in for surgery and afterwards my surgeon said it looked like a classic fibroadenoma but that he would send it to the pathology lab.  Another few long days later i got a voicemail from my surgeon.  Yes, a voicemail telling me it wasn't a fibroadenoma but a 2 cm phyllodes tumor and that it showed characteristics of being benign.  (We also had a second opinion from the MD Anderson pathology lab since they are so rare to confirm it.) The next week I went in for a follow up appointment and asked if he needed to go in and take some of margins away since they do have a higher reoccurence rate even if benign.  He downplayed the whole thing and after that appointment plus giving me my abnormal results on a voicemail, I switched to a new breast surgeon.

I love my new surgeon and she agreed that going back in and taking breast tissue wasn't needed right now since I was a healthy young woman.  She told me to have ultrasounds every 3 months for the next year to make sure there's no reoccurence and then we could go to every 6 months etc. 

Last week I went in for what was suppose to be my last ultrasound before I got to switch to going just once a year since all my others had been perfect.  Unfortunately the ultrasound revealed a brand new small tumor this time on the underside of my left breast (the other one had been found just above my nipple at about 12 o clock).  As you can guess this was extremely disheartening and the mind automatically shoots to the worst.  I see my doctor in 2 weeks to discuss what the next steps will be.

Like you all in the forum, the information out there on phyllodes tumor is very small with a lot of contradictions leaving one not knowing what to believe.  I'm a newly graduated registered nurse and even being in the medical community hasn't given me any new concrete information. 

I'm not sure its possible to "overreact" when faced with a rare healthscare.  And don't let anyone tell you that you are since they aren't the ones primarily dealing with it and the effects it can have on your family and peace of mind.  ANd if you aren't comfortable with your doctor and surgeon then I would suggest  finding a new one like I did because your doctor/surgeon should be the biggest advocate for your health. 

I wish everyone the best and am so glad I found this blog and hope to only see good follow up news!

I was 20 when I found my first lump and went through the very speedy process of ultrasound and surgeon referral.  The surgeon was really great and she suggested skipping the biopsy altogether and removing it immediately.  I had surgery and found out it was indeed a phyllodes benign tumor.  I had a mammogram and ultrasound follow up 6 months after my surgery and then missed my yearly appointment about 6 months ago and I haven't rescheduled (Which was ignorant and neglectful of me, I know).

I'm now 22.  Seven days ago, Wednesday, I found a new lump in the opposite breast.  I had a scheduled physical on Friday so I just waited until then.  My new doctor saw my past history and referred me to an ultrasound immediately. I have that tomorrow.  I'm almost positive it's another phyllodes.  It's slightly movable and hard.  It doesn't hurt or isn't sore and the skin is not red or warm.

My experience for young women who have these is that, yes it is rare. Do not take any chances and have it removed immediately.  Do the follow up doctor visits and since being so young I would suggest ultrasound over the mammogram until late 20's or early 30's. They couldn't even get a good read on my mammogram because of my age and the breast (gravity hasn't gotten me just yet, funny but not funny and those things hurt just as bad as everyone says they do!!).

I'm worried about the tumor this time around way more than before because I know more than I did the first time.  It's so rare for women my age to get them and for them to reoccur in a different breast.  I have read that they can also come up in a completely different part of the body.  This concerns me because it has come up in the different breast, which makes me feel that it's likely that I'm a part of that rare percentile.  If that makes sense at all.

Well wishes and prayers,

A.

Hello, I need some help;  about 1.5 years ago a benign tumor was found in my left breast;in the 2 oclock position and about 0.8cm.  I had a mammogram first, the a spot compresion mammogram( i beleive it's called) and finally sonogram ( that's how they found it) .  My doctor told me that it was nothing to be worried about, but that  i should have it checked within 6 months.  I never did, because of insurance purposes.  Lately I have been experiencing pain in my breasts, but specifically in my left breast.  it is not due to pms, and it does not hurt to the touch.   It is on the right side of the left breast, very close to the nipple and at the 9pm position.  Should I be concernend?? I don't know what to do.  Any input would be greatly appreciated. 

I am 45. About 2 months ago, a screening mammo found a mass and I was referred for a diagnostic mammo and ultrasound. They showed 2 masses, both of which were biopsied with a core needle bx. One was labelled fibroadenoma and the other a benign PT. A second pathologist confirmed. Yesterday, I had an excisional bx To remove the PT. it will be sent to the path lab again to confirm benign. My surgeon insisted that a 3mm margin was sufficient, so that's all I had removed. I hope it was enough to prevent recurrence, and I hope the new path report confirms benign. I have had some pain from the operation, but not nearly as bad as I feared. And, at least so far, there is less deformity and swelling than I had from the core needle biopsy.

hi 9patty,

I just had a lumpectomy a couple of weeks ago to remove what the surgeon was sure was a 3" fibroadenoma from my left breast that was on my chest wall. She called a week later with the results saying it was a phyllodes tumor but that it was completely benign. She said it may come back and if it does than she will have to remove more health you issues around it. I Guess she just took it out to and no extra. SHe said I don't have ultrasound every 6 months mammogram maybe but I have dense breast tissue. She told me not to worry about it, she acted like it was nothing. Can't help but be concerned it was on my chest wall, if it comes back how would they remove extra healthy tissue?