phyllodes tumor

amhess

Well I just had my lumpectomy yesterday for my 4cm phyllodes tumors. In the last 3 weeks it grew up to 12cm. My surgeon said it was the size of a fist. I did get a picture of it

Even though my sonogram assisted core needle biopsy came back benign, I can't help but feeling like my Surgeon and my PCP think its malignant. Isn't it very rare that a biopsy is a false negative?

So I am feeling great after this fist was removed and maybe I should be resting better? I have been up doing things all day. No pain unless I stretched all the way is s this normal after surgery?

Does anyone else have any experience with a phyllodes tumor, a false negative, or a regrowth of a benign tumor. I would like to stop googling everything and hear from real women that have been where I am.

Please and Thank you ladies

amhess

its easy to get lost in the scramble on these forums. So bump! Hopefully smeone will read this. I guess I need a friend that knows where I'm coming from.

amhess

trying again tonight to see if anyone has anything about Phyllodes tumors they will share.

Has anyone ever had one grow back. Or need a second surgery?

Janett2014

I don't know much about Phyllodes tumors except I believe that are usually benign, so I think it would be somewhat unusual to get a false negative.

Hopefully someone else will chime in. I have a friend who had a Phyllodes tumor, so all I know is the little bit of research I did when she was going through it.

Sorry I couldn't give you more info. It's good that you're feeling so well after the surgery though, especially with the size of the tumor.

amhess

Thank you Janett. I read that they were mostly benign too! Just keeping positive thoughts. How did your friend do? No regrowth?

Janett2014

She is doing well. It's only been about 8 months but no regrowth so far.

Gfmr

Hi

I too had a benign phyllodes tumor removed a few weeks ago.

I am trying to find a doc for a second opinion about follow up as I too concerned about regrowth, my current margins, etc.

Justfedup

Hi there

I hope you will see the post and find some comfort in knowing that you are not alone out there.

A couple of years back at 28 I was diagnosed with borderline phyllodes. I had a lumpectomy then 11 days later they told me they hadnt got a clear margin and I went under the knife. I was told it was all over. But 1 year later it recurred and I was told it had come back. This time they took a huge chunk of my breast and I had a breat reduction surgery. Again 1 year on it seems to have come back, only this time the consultant believes its a new growth rather than recurrence of the old. Mine too like yours grew to a very large size (6cm 1st time and 11cm 2nd time).

There doesnt seem to be much research out there but I found an article that I have found quite helpful (apologies moderators if I am not allowed to post a link).

http://www.bcpals.org.uk/content/phyllodes.html

Because there is so little known about it we are all facing the same battle.

Sorry I couldn't be more help but just know you arent alone. Hope there has been no more recurrence and you are doing well x

(Edited by Mods to make link work)

Moderators

Hi Gfmr and Justfedup, and welcome to the BC.org forums! We're sorry that you're here and worried, but glad you've found us and decided to post. We know you'll find lots of answers and support here.

Best wishes,

The Mods