I was told I had a fibroadenoma but my biopsy came back grade 3 (borderline). Mine is a lobular neoplasia and I think it's a pleomorphic one which is the worst grade 3 category. Mine is small. I've been reading up a lot and phyllodes do grow really quickly. They need to be removed as they can get really big and they can come back. There is a low chance they can turn cancerous, whereas with my type, mine could be cancerous or it could be precancerous or even removing it still means I have a significant chance of developing cancer in years to come. My breast is sore too. I'm having my lump removed on 24th but I'm really worried as there's a significant future risk with mine. My main annoyance is that I've had to really push for information. They didn't volunteer what it was until I asked at my pre-op. My consultant is very reassuring ... but is he being too reassuring? Have you had the same kind of problem? I'm worried about the future - I'm sure you are too. Part of me just wants to get rid of my breasts completely and have a restructure but I'm sure there are risks with that too. 

Hi.

Thank you for your reply.

I had a scan and biopsy this morning.

All I keep hearing is fibroadenoma. Even just now on the phone to the breast clinic they are saying it looks like a fibroadenoma. I said that a what you kept saying last year and it wasn't. I just feel that's what they are saying to everyone. They have said they will discuss my case on 28th August.

I'm concerned because I was told it could come back as borderline or malignant. Also by the fact that the consultant has written urgent over all my notes and my breast is so sore. The slightest pressure, even holding my pets make it hurt.

Depending on the outcome of this biopsy, mastectomy is an option with reconstruction. Again, this is what I have read on the little literature that is available about phyllodes my head is all over the place, but yes I find you do need to push for information from the consultants. 

Hope all goes well for you on 24th. 

How have you got on with your phyllodes journey? Was it all ok?

Hi there 

i have the same condition as you and these tumors do grow really fast. I was quite young when I was diagnosed and the only option was to surgically remove everytime it came back and and also have it checked if its benign or malignant so thats what i did and thankfully the lump was benign everytime. it stopped growing after 3 yrs and the doctor was happy for me to do a yearly checkup. They also talked about possible reconstruction years ago but its still same but only small in size  im not really interested in doing it and im happy with my breast size and how it looks at the moment. 6 years on and it hasn’t returned back since. I check my breasts from time to time and make a note of any new changes i see and note the date and then I discuss it with my doctor on my next appointment. Ofc, I’d suggest you go to gp if you are really concerned or experience any symptoms or notice any changes that worries you. You could also contact your breast care nurse for help and any kind of support. It is very difficult but I hope youre still trying to stay positive and happy. I dont know if its any helpful and i hope everything goes well for you! Eat well sleep well drink well! 

Could I ask if you experienced pain elsewhere. I have a large Phyllodes tumour I am still waiting for biopsy results but I have upper back pain directly opposite? 
 

hi,

for me no i didnt experience pain anywhere in my body apart from my breast i only experienced shooting pain time to time, sore breasts and discomfort at times when doing things cause the tumour grows too fast and it got big and heavy. every case is different though i hope all goes well for you and find out what's causing your back pain!