Anyone else with Phyllodes Tumour??

I have just been diagnosed with a rare type of breast cancer called Phyllodes. I haven’t yet found anyone with it but i really want to. The cancer mostly occurs in menopausal women i have been told however i am only 17. The breast care specialist who is helping me said she has been doing her job 14years and has never met anyone else my age with phyllodes, which is quite frustrating because i don’t know what to expect… any advice??

Best wishes, Ellie xxx

hi Ellie

When i was diagnosed with Bc is was fully expected that it would be a Phyllode tumour. So i did do a little research on it. As it turned out my cancer turned out to be much rarer than phyllods and much more aggressive (just the way the cookie crumbles). I know it sounds daft but i was really upset that it wasn’t phyllod. I knew pyllodes where much easier to treat.

Most Phyllod tumours are benign, but can become cancerous if left(but not all) I hope yours is benign (non cancerous)

Either way, Phyllod tumours are removed by surgery alone, no chemo needed. The suregon will just make sure they get really good margins, this ensures the tumour does not come back. Obviously i,m no expert, this is only what i read. Your doctor or breast care nurse will give you a much clearer picture. Dont be afraid to ask questions and if you feel a little intimidated by all the professionals, take someone with you like your mum or a friend who can ask those questions for you.

17 is no age to be having to deal with something like this, my heart goes out to you.

I hope your having your lump removed very soon, because i think the waiting is much worse than anything else. Once you,ve had it removed you’ll feel much better and hopefully that will be the end of it for you.

Good luck and hugs Maria x

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Hi Maria, i’m so sorry about your bc, what is it called? (i’m doing alot of research on all type at the moment)

i had a lumpectomy about 3 weeks ago and it showed that unfortunately mine is malignant, and i need a mastectomy because the cancerous cells had spread all across my breast tissue… and after this i will need radiotherapy.

all the best, ellie xx

Hi ellie

I,m very sorry to hear this news, I was really hoping that you could be spared a mastectomy and any further treatment. Try to keep positive Ellie - I know it’s hard! but you will get through this. I don’t really know any more about phyllod tumours other that what i,ve already said and i suspect like my self your going to find very few people in the same situation because of the rarity of it ( i have metaplastic), but regardless of the type, aggression etc we all still have a common bond in terms of what we are going through, and there are many wonderfull people on these sites to offer support.

I wish you all the luck in the world. Maria x

Bumping this up for you Ellie

xxx

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Hello Ellie,

Bumping this up for you - take care of yourself! xx

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Hi Ellie,

Have sent you a pm.If you are not sure how to find these - look at the top right corner of the page where you log out and it shows your name. It should say 1 message.

Dawn
xx