Any experience with Phyllodes tumour in the breast?

[Yellowsky21]

I am awaiting breast biopsy results and understand my case will be discussed tomorrow at my hospitals mdt meeting. Early indication suggests it may be a phyllodes tumour and they need to meet to discuss the findings and determine whether it is malignant. I am scared. Any advice experience words of wisdom or hand hold much appreciated please

I don’t have any experience but just wanted to say that I’m thinking of you and hope you get the support that you need

I had a tennis ball sized phyllodes tumour a few years ago. It turned out to be benign thankfully. I had an ultrasound, core needle biopsy and a mammogram. The lump was round, hard, very mobile and smooth. The wait for the biopsy results was terrifying. The good news is that most phyllodes tumours are benign.

What did the ultrasound tech say to you? They did mention to me that they thought it was a phyllodes tumour or fibroadenoma but they couldn't confirm without biopsy results.

I had the lump removed. It was a very quick surgery - about 20mins.

I will be thinking of you! Keep us updated. Xx

I had one about 10 years ago.
It was fine and benign as most are. I think they just like to whip them out just in case they go on to develop into something malignant.
Operation to remove took about 20 minutes or so. I had a small scar which disappeared after a few months. The only downside was being unable to wear an underwired bra for what seemed like for ever as the wire end was exactly where the incision was which didn't appreciate being stabbed repeatedly.

Thank you so much h @SparklyBlueDressthat is much appreciated

Thanks for coming back to me @Jelly4444. The lump is about the size of an olive. Following the ultrasound and mammogram I had a biopsy but at the time the notes said possible fibroadenoma but when I rang yesterday it seems it’s a phyllodes tumour. Hoping for more information today

Thanks for replying @snowibunniI think no matter what this is I’d rather it be removed because the worry is just too much.

Yes me! Had a benign Phyllodes removed last year. Similar size. Operation straightforward and healing went well - barely any scarring.
I found a really good Phyllodes Facebook group which was v helpful.
I know it’s hard but try not to panic. They are mostly benign and straightforward to remove.
I’ve supported friends through breast cancer and Phyllodes felt a whole lot easier than what they went through.
Good luck

Thank you @spinningplatez. Did they tell you straight away it was benign or did they remove it first and then know?

Had the call they say it is b4 phyllodes tumour

Hi @Jelly4444@spinningplatez@snowibunni I have been told today it’s a B4 phyllodes tumour and it needs to be removed. Were yours described in the same way? Trying to understand the context. I have a face to face appointment next week

Hi @Yellowsky21

I didn't get a particular classification for the phyllodes tumour. I researched every bit of the test results that the hospital gave to me so I would remember.

They did say that my tumour was a "suspicious phyllodes tumour" however and that they had to check for malignancy considering how quickly it grew. It appeared over 3 weeks & was just under 7cm. My biopsies were clear but I don't think that the biopsy gives a full picture - they need to remove the tumour and test various different areas of it to be sure its clear. Suspicious phyllodes always need to be removed. Smaller benign tumours sometimes don't require surgery.

They said they couldn’t tell if it was definitely benign so would need to remove it to test it. In a way it was a good thing because they didn’t need to do another procedure after the diagnosis, it was all done in one op.

Had one removed about 7 years ago, as far as I’m aware they can’t say 100% if it is phyllodes until removal is what I was told. So had who thing removed and 2 weeks later told it was definitely benign phyllodes but needed another surgery as margins weren’t clear. Had another surgery, never had any problems since