benign Phyllodes tumour

[Nadine]

I've just been diagnosed with benign Phyllodes tumour after finding the lump about two months ago.  I was initially told it was fibroadenoma. I'm trying to find information online myself as so far I've not been told too much about it, hoping to see a consultant very soon.  Does anyone know how long the wait for the initial surgery is and how much recover time it takes after?  It seems to be growing so fast and im very worried.

[LFaye]

Hi Jen,

I was diagnosed with a malignant phyllodes last year aged 25. Had 2 surgeries, 1 to remove tumour then 1 for clear margins. I also had 5 weeks of radiotherapy as mine was cancerous.

There is a phyllodes support group on Facebook that's amazing. Women like us from all over the world. Just search for 'phyllodes support group' and fill in their questionnaire for access.

I hope your second surgery went well and happy to answer any questions you might have xx

[BonitaE_BCC]

Hi jen1985,

I'm sorry to hear you've been struggling to find information with Phyllodes. I am sure some of our users will be along to share their experiences and show their support soon. 

In the meantime you can always post on our Ask the Nurse board or call our helpline on 0808 800 6000, who will be able to talk you through any questions you have and offer a friendly ear. The opening hours are below:

Monday-Friday, 9am-5pm
Late opening Wednesday, 9am-7pm
Saturday, 9am-1pm

Best wishes, 

Bonita 

[jen1985]

Hi there,

Just seeing if anyone has any personal experience with Phyllodes tumour? I have had the lump for around 6 years and was originally diagnosed as a fibroadenoma. As it has grown recently they carried out a biopsy and determined it was a fibroadenoma.
I decided to have the lump removed and have just been for results today. They explained that it is in fact a rare benign phyllodes tumour. I have to have more surgery to achieve clear margins to make sure it is all removed.

Struggling to find much information on the Internet and would be good to hear from anyone that has experience with this tumour. I am relieved it is benign but also worry about reocurrance.

Many thanks