Anyone have a Phyllodes tumor reoccurance?

fleur-de-lis

The history:

I had a benign Phyllodes in 2009, although there were findings of ALH within that tumor.

Just found out that I have a reoccurance within the same breast, but in a different location within that breast....this one appears to be smaller than the first tumor, which was a hefty 9CM jumbo.

Depending on "other factors" due a concurrent condition, I will probably pursue a MX on that breast, since another large chunk out of the breast tissue will literally leave me with nothing.

Anyone have experience with a reoccurance of this type of tumor

ddfair

Hello Fleur,

I have had 4 reoccurences of the same malignant phyllodes tumor, finally had a mastectomy and rads. What exactly do you want to know? Have you read the information about phyllodes here on BCO? I highly recommend it.

De

fleur-de-lis

wow, four reoccurances...and all malignant? Have they pursued any genetic testing? At what point did they use Radiation in the TX. Protocol? How are you doing post MX? One of the major NCI centers, Mayo Clinic, has always considered Phyllodes to be a form of Cancer, even if the tumor was not malignant. Several of their MO suggest a MX on the affected breast.

I am pretty familiar with the in's and out's of the tumor...but it is a rare tumor, so I am looking for others in my "same shoes"so to speak. There is a Facebook group...but it is fairly quiet. Always great to connect with others, especially when you are a "odd duck" in the cancergroup😳

As a side note, I have a true, germ-line immune deficiency and deal with the Epstein-Barr virus from time to time. I had a relapse this past spring and was treated with Valtrex...all is good.

But, several Universities are actually starting to, finally, study Phyllodes tumors...as more and more of the tumors are shown to be of a "mixed type" of carcinoma. EBV has been implicated as a causal agent in Phyllodes tumors. University of Michigan pursued that study.

ddfair

Fleur,

Thanks for the info. I hadn't heard that all phyllodes tumors were considered a form of cancer. I was told benign is always benign. Glad to hear someone is studying it.

I wasn't given genetic testing as it commonly occurs in 40 ish women. I had rads after a mastectomy with the 4th reoccurence. There wasn't enough tissue left to do another lumpectomy. Also had DCIS and LCIS in all the tumors.

I tried that Facebook group, but found it really disorganized. I like this site because it's easy to find things. Not a fan of Facebook in general. Don't trust their privacy settings.

I too appreciate finding other odd ducks.

De

fleur-de-lis

Sorry that you had to deal with the DCIS and LCIS issue .....I have read that more and more Phyllodes are being found to have mixed neoplasms. How far apart were your tumors, time wise? Mine was 7 yrs.

tona1994

What is DCIS and LCIS? Still learning abbreviations.