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Topic: Anyone with a Phyllodes Tumor?

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: Apr 6, 2013 09:37AM

PMRobbins88 wrote:

My Doctor and Radiologist are unsure what my lump is and I am digging for answers. Ultra sound showed a 2-3 cm mass with a cyst inside of it. Awaiting word to see if I am eligible for a biopsy since I am unisured.

I have been digging through on line ultra sound images and the only thing that comes close to what my lump looks like is the Phyllodes. I would like to know if anyone here has had or has a Phyllodes Tumor and what their experiences are and how they were diagnosed. I am gonna call my doctor on Monday and voice my concern here.

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Apr 6, 2013 09:45AM Moderators wrote:

Hi PMRobbins58,

While you wait for the ever-helpful advice from the other members here, you may be interested in reading up on the main site's pages on Phyllodes Tumors of the Breast, including information on symptoms, diagnosis, and treatment.

Hope this helps!

The Mods

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Apr 6, 2013 09:57AM PMRobbins88 wrote:

It sounds identical! Thank you! But I see no mention of translucent skin to the point where underlying veins can be seen. That is directly over my lump, which is right under the skin. Again, this matches up with Phyllodes since Phyllodes does not occur in ducts or lobules. Still need some answers....

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Apr 7, 2013 06:59PM annagoanna wrote:

Hi, I was diagnosed with malignant phyllodes tumours in 2009 and had two surgeries to remove the tumours and achieve the clear margins required.  

Many people with phyllodes do not have a definitive diagnosis until the tumours have been removed and the pathology team have been able to look at the excised tumour more closely.  

However it is worth remembering that the best course for reducing any recurrence or metastases (which are rare) is to ensure that good clear margins around the excised tumours are removed.  Many surgeons don't remove as much as they're aware of the asthetic of tumour removal however do push for good clear margins.  Breast tissue also has the fabulous capacity to 'reshuffle' into place over time so any indentations are often not seen some months after surgery.  

I put my journey online with some reference links to other sites and papers that you may find of interest.  There is also a phyllodes online support group within Facebook if you feel it would be useful to 'speak' with others who have been diagnosed.

Best of luck and keep positive 



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Apr 18, 2013 10:30PM teesa2you wrote:

I have a date with the surgeon on tuesday to discuss my open biopsy. The radiologist report said possible phyllodes tumor. But I think they are treating it like a fibroadenoma. I am 45 and have had it biopsied a year and a half ago only to have it grow back. I am staying positive!

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May 13, 2013 09:43AM MaineCoonKitty wrote:

I had a malignant PT diagnosed in May 2009.  It grew very quickly in a couple of months time.  The very first symptom I had was something just didn't feel quite right in my left breast when I wore a tight sports bra for running and as you mentioned, the skin was so translucent that the veins in the breast became very noticible.  I had a complete mastectomy on the left side and my PT was so large and so agressive that I underwent both chemo and radiation.

The good news is that I'm now 4 years out and everything is great!  I don't even think about cancer anymore.  I consider it a part of my past history and while I am vigilent about it returning, I have quit worrying about that and have moved on.  I survived the PT, the chemo and the radiation and I've never felt better or looked back.  Be brave and don't let yourself get swept away with fear or dread.  Face it head on and fight it with everything you have, then get on with your life.  You'll do fine.

Dx 4/27/2009, 6cm+, Grade 3, 0/0 nodes, ER-/PR-, HER2-
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Jun 25, 2013 07:11AM ch75 wrote:

When i was 35 I had a core needle biopsy in Nov. 2009 and radiologist said it was a fibroid, nothing to worry about. The lump continued to grow and grow and grow. The radiologist started to become concerned and recommended surgery to remove in April 2011. Turns out it was a phyllodes tumor. Three months later at follow up mammo i had new lump. That one was removed Dec. 2011. My dr says core needle biopsys can miss diagnose phyllodes tumors.
Its two years later and no new tumors...yeah! I experienced a great deal of pain with the tumors and after surgery. I now take neurotin to manage pain.
I go Fri for my yearly mammo and ultrasound. I get sooo nervous because i have been told there is high reocurrance with PT.
I have found the best info comes from other women who have had PT not from some of my drs.
Best wishes!

Dx 11/2/2009 Surgery 4/11/2011 Lumpectomy: Left Surgery 12/12/2011 Lumpectomy: Left
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Jun 26, 2013 11:16AM ADM81 wrote:

My path report is also unclear but they think it is either fibroadenoma or PT. I go for an MRI tomorrow and meet with surgeon again July 9 to schedule lumpectomy. Ready to get this behind me!

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