Phyllodes tumour

I had a mammogram, ultrasound, FNA and Core biopsy done last week and they told me it was a fibroadenoma so big relief. However my surgeon called me last night and told me it is a Phyllodes tumour from the results of the FNA but needs to wait for the core biopsy results when he’ll see me again to discuss what to do but it will definately need removing. From what i can find out it seems that they can only confirm a Phyllodes tumour isn’t malignant once it is removed - is this right??? If anyone has any experience or other information that would be great as this seems to be quite unusual?
Thanks,
Lucy.

Hi Tinks39

I have put for you below the link to BCC’s publication regarding Phyllodes tumors. If you want to have a chat further about this then please don’t hesitate to give the helpline here a ring.

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/60/

Take care,
Jo, Facilitator

Hi Lucy

I was diagnosed with a phyllodes tumour last October. There was no test to say if it was benign, borderline or malignant, which is the classification scale for phyllodes. I had a wide local excision and then with the pathology results from that operation, my doctor was able to tell me what kind I had. Phyllodes is really rare, and the vast majority are benign.

If you have any questions I’d be happy to try and answer them. Obviously I am not a doctor, but can tell you what my experience of phyllodes was like from the perspective of a patient. When I was diagnosed I found the lack of information available very frustrating but the BCC leaflet Jo recommended to you has the basic info.

Best wishes

Terry

Hi Terry
Thanks very much for replying! You’re right the lack of information is frustrating!
My core biopsy came back as benign fibroadenoma which my consultant says doesn’t mean its not phyllodes as the cytology refers to the leaf like pattern of a phyllodes. So i’m booked in for my surgery a week on Tues. I understand they need to get a 2cm clear margin if it is Phyllodes (benign or malignant)
How long did it take you to recover? I have a 19 month old son who’s quite heavy so a bit worried about lifting him?
Lx

Hi Lucy

Well, the wide local excision I had was really big- my phyllodes tumour was 11cm! So with the margins it was most of my breast. This made the surgery quite complicated and left me with one mini-breast. It took about a month to get over the anesthetic, and I had to sleep on my back for 2 weeks afterward before I could be comfortable on my side again. I definitely couldn’t lift anything for a good while after that.

So it depends on your surgery and tumour size. On the general forum pages I am sure there are loads of other women who have had surgeries and have small children, and that they’d give you some idea of what it will be like and pointers on how to cope.

The other thing is, I don’t know if you’d be interested, but there is a phyllodes forum on: rare-cancer.org
I know the site name is a bit frightening but actually this seems to be the main meeting point for women with phyllodes and they have a lot of info.

I will be thinking of you next tuesday.

All best

Terry