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Topic: Phyllodes tumors

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Jan 16, 2013 12:40PM

goldengirl33 wrote:

I have a probably newly diagnosed (awaiting path results) benign phyllodes tumor, but from what I have read about phyllodes is that there is a pretty good chance that the tumor will come back and be more aggressive.  I had my tumor for a year and a half that I knew, possibly longer.  Ive been through mammo, ultrasound, biopsy, and now lumpectomy a week ago on the right breast.  Somehow I feel like I have been handed a death sentence, even though I have not heard my path results yet.  I dont know if my margins are clear or not.  Im only 31.  Im scared to death now that this thing will take me out.  Has anybody else felt like this?  Did your tumor grow back even with negative margins?  I just feel really overwhelmed and scared right now.  I had no idea of the magnitude of the situation.

According to the path report from my needle biopsy, it was "spindle cell lesion suggestive of low-grade phyllodes tumor" but surgeon is treating as a phyllodes.  Dont know if that make a difference or not. 

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Jan 19, 2013 08:49AM loopy123 wrote:

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.

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Jan 21, 2013 09:37PM goldengirl33 wrote:

Loopy, thank you so much for replying.  I got my results last week on Thursday (01/17/13) and the good news is it is benign and my margins were clear (YAY!).  However, exactly what it is was not clearly written in the path results, not a definitely confirmed phyllodes.  Its definitely a spindle cell tumor of some type with differential of low-grade phyllodes, spindle cell lipoma or other kind of spindle cell neoplasm.  They are sending my case to UVA (University of Virginia) for confirmation of the diagnosis, but whether or not I will hear anything from that is hard to tell.  My surgeon has been great!  She did remove it with wide 1 cm margins.  She said the "bowl" of tissue that she removed after she had taken the tumor out had one focus on the inside, but the outside margin had no trace of abnormal cells.

I will need followup - for the next two years as a matter of fact.  I will have to have ultrasounds every 6 months for two years along with follow-up with my surgeon to keep a close eye on things.  It feels nice to know that I am not the only one out there that feels the way I do.  I still feel apprehensive about things, but Im trying to lay that aside especially after my path results.  Thanks for the reassurance!  After what I have been through, it has definitely changed my outlook on life and changed my attitude overall.  I also sympathize with those going through cancer treatment...I cant begin to imagine how they feel or what they are going through but its so much more than I have been through.  Pink is definitely my new color, though.  Even found me a pink deck of playing cards for the Breast Cancer Research Foundation this weekend.  :)  I wont be opening the box.

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Mar 10, 2013 06:20AM Beenarocks wrote:

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?

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Jun 26, 2013 02:20PM ADM81 wrote:

How are you doing Beenarocks?

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Aug 5, 2013 09:36PM Ccc67 wrote:

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.

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Aug 7, 2013 10:09PM Ccc67 wrote:

Had my surgery today. Told the surgeon to go ahead and take 3 mm margins. Hoping for the best.

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Aug 11, 2013 12:32AM MarinaB wrote:

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..

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Aug 12, 2013 04:37PM Ccc67 wrote:

Got the path report today. Feel so lucky. The report was again benign PT and surgical margins were clear. Looks like this chapter in my life is over. Yay!

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Aug 25, 2013 12:46AM Cdx wrote:

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.

Dx 2011, 2cm Dx 2013, 2cm Dx 2013, 1cm Dx 2013, <1cm Dx 2013, 2cm Dx 2013, 5cm Surgery 8/13/2013 Lumpectomy: Left
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Aug 25, 2013 12:56AM Cdx wrote:

Mariana I was thinking the same today since my mom died of IBC. I think phyllodes is a benign IBC, there are so many similarities between them from the treating like a skin ca to the uncommoness of it etc. And I've had insane pain and heat comes off it and all the wacky symptoms, lol and still do. But I'm half her age she died 38 so no one wants to believe It's anything lol.

Dx 2011, 2cm Dx 2013, 2cm Dx 2013, 1cm Dx 2013, <1cm Dx 2013, 2cm Dx 2013, 5cm Surgery 8/13/2013 Lumpectomy: Left
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Aug 26, 2013 11:10PM - edited Aug 26, 2013 11:10PM by trisha1012

This Post was deleted by trisha1012.
Surgery Mastectomy: Right
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Aug 26, 2013 11:12PM trisha1012 wrote:

I'm 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 menstrual cycle was out of wack and he didn't 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 surgeon 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 surgeons 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 didn't 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 receive 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 receive 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 unbelievable 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.

Surgery Mastectomy: Right
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Oct 12, 2013 09:35AM luckykitkat09 wrote:

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.


Surgery 3/15/2011 Lumpectomy: Right Surgery 6/20/2012 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right Surgery 6/20/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/16/2013 Reconstruction (left); Reconstruction (right) Surgery 5/29/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/18/2015 Reconstruction (left); Reconstruction (right)
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Oct 22, 2013 06:47PM TamB71 wrote:

In Oct 2012, I had a biopsy, which came back negative. I had a 'marker' inserted into my right breast to identify the place in question. I was diagnosed as having fibroadenoma. I had my Mammogram done last week and was called in by the Radiologist for an Ultrasound. The Ultrasound showed a large glob in my right breast(same as last year). The Radiologist said because of the growth of this mass, he diagnosed me as having a Phyllodes Tumor. When comparing films from last year to this year, there was a huge amount of growth! I have a surgical consult on 11/1/13 to figure out my best options.

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Oct 27, 2013 10:06PM luckykitkat09 wrote:

@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.

Surgery 3/15/2011 Lumpectomy: Right Surgery 6/20/2012 Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right Surgery 6/20/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/16/2013 Reconstruction (left); Reconstruction (right) Surgery 5/29/2014 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/18/2015 Reconstruction (left); Reconstruction (right)
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Jun 30, 2015 06:06AM UKWALES95 wrote:

Hi, I know this post is very late in sending, I have only just discovered this inspirational page after hours of searching!
When I was 16 I was diagnosed with multiple phyllodes tumours, I then had three surgeries in the space of two years to remove all tumours however they kept coming back despite the margins of skin tissue removed around the tumours. I am now 20, with the best possible news that they are so far benign, I am still left with re-occurring tumours, confusion between specialists, miss-diagnosis and *a lot of stress!!* I am being transferred every two/three months to a larger hospital for core-biopsies. after four years, it is my initial aim to have a mastectomy, or to at least understand all that a mastectomy entails,  however because of my age, the confusion between when and why the tumours don't stop growing and the effects a mastectomy can have on a person, I have been denied and am currently fighting for the right for the risk to be removed. 
 If anyone has had any similar experiences, i'd love to hear from you.
 Thank you and good luck to you all :D xxx

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