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Topic: High grade malignant phyllodes

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: Oct 16, 2014 07:32AM

Cookies wrote:

I was told yesterday day by the radiologist who did my core that I have malignant phyllodes that looks aggressive - high mitotic rate , high cellularity, high riplication.  I am scared because I've had bone pain for three weeks and can't meet with the surgeon in 5 days.  I was told chemo and radiation are not helpful an my 5 year survival was between 54 and 70%. I have two small kids and I can't stop crying.  I don't know where to turn. They wouldn't order a ct or pet or bone scan until I see the surgeon.   Please god - someone help me

Dx 10/13/2014, 2cm, Stage IIA, Grade 3, 0/7 nodes, ER-/PR-, HER2- Dx 10/15/2014, 2cm, Grade 3, ER-/PR-, HER2- Surgery 10/21/2014 Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy 11/18/2014 AC + T (Taxol)
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Oct 16, 2014 08:35AM Bicque wrote:

{{{Cookies}}} I have no helpful information to offer you, just wanted to give you a hug . The members of this site are a wealth of information and experience and I know that someone will be along soon with some good information.

Dx 12/2013, IDC, 2cm, Stage I, Grade 3, ER+/PR+, HER2- Surgery 1/13/2014 Lumpectomy: Right
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Oct 18, 2014 10:05PM Racy wrote:

Dear Cookies, if you do a search for phyllodes on this site you will find some helpful fact sheets. You may also find some posts by other members with the same type of tumour.

It sounds to me as if the radiologist was premature to give you a prognosis, and the statement that chemo and rads are not helpful seems to be at odds with the information in the fact sheets on this site.

Do you have a copy of your pathology report? If not, get one. If you post more details about the size of the tumour and whether it has receptors for ER, PR or HER2, we may be able to help you more.

Hang on and keep posting here. We are here for you.

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Oct 18, 2014 10:15PM - edited Oct 19, 2014 05:02AM by Moderators

I will keep you in my thoughts and prayers in a rough time such as this. Any kind of cancer is rough to deal with as I have a Grandma and Sister who both died from ovarian cancer. However I would suggest that you keep people around you that can keep you positive and surrounded with good energy. Smile and I would just like to give you a HUG. 

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Dec 12, 2014 11:04PM ddfair wrote:

Hi There Cookies,

I have had malignant phylloides 4 times in the last 20 years.  Multiple lumpectomies then bilateral mastectomies.  I got so sick of the "stay positive" and "good energy" crap.  My advice, get mean.  Then find a doctor who has experience with this.  There is VERY limited clinical data on long term outcomes.  Best wishes.

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Apr 14, 2015 05:00PM - edited Apr 14, 2015 07:28PM by Samk

Hope things are going good for you.

I have been told by some very experienced surgeons, that Phyllodes tumors are rarely life threatening - practically never life threatening.

They believe that there is, a very very low probability of threat to life, from most of the Phyllodes tumors.

That said, it should be surgically excised with very wide margins, by an expert surgeon who has handled them before.

So, try to relax.

Also read

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Apr 14, 2015 07:27PM - edited Apr 14, 2015 07:27PM by Samk

This Post was deleted by Samk.

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