Phyllodes Tumour

Hello everyone. I'm 28 and I've just had a rollercoaster of a journey with a lump in my left breast.

I had a lumpectomy to remove what the doctors were convinced was a fibroadenoma. It turned out to be a benign phyllodes tumor. I understand these are quite rare, fast growing (it was in my case!) and can regrow.

My pathology report showed that the tumor what removed entirely but, in certain sections, they were unable to determine whether the thin band of fibrous tissue abuts the surgical resection margin. I.e they weren't sure if there was a wide enough cut around it (presumably because they assumed with my age and health that it was in fact a fibroadenoma). 

They are reviewing my case today, but I have a relative in Canada who has told me that the surgical resection margin in 1cm around the tumor site minimum there to prevent regrowth.

On the basis that my surgeon decides not to re operate and just discharges me, does anyone have experience with regrowth?

I obviously put all my faith in doctors and especially my surgeons they have been wonderful. I just cant help worrying about a regrowth when my aunty (also a doctor) has raised concern about the pathology report.

Any advice would be appreciated !

Parents
  • Hello ladies 

    [@Mcvikki]‍ , [@sky_lights]‍ , [@Opal9]‍ , [@JessieL]‍ [@Louisesjc13]‍ 

    may I please kindly ask what your Phylloyd tumours felt/feel like?  I.e. round/jagged, oval, hard/soft, mobile/immobile etc I am currently waiting for my breast clinic appointment on Monday and trying to cling onto all the hope I can get about the lump I have found (although I have a very bad feeling it's going to be bad news).  Just need some little bit of hope this will turn out to be a FA or Phylloyd :( 

  • Hello, I could only feel my first one as the second one was at my chest wall and only found from imaging. The one I felt was smallish (grape size), hardish, and immobile. However, please remember this - my GP who is excellent said that she never thinks about what a breast lump could be as sometimes she has thought the feel of a lump a was definitely typical of cancer and it turned out benign - sometimes the reverse happens, too. So, the reality is that you will not know until you go through the assessment process at the breast clinic. I know the wait is horrible but many lumps do turn out benign (and there can be several types of benign lumps). One word of caution: phyllodes can present as being benign in one part (it can even present as a benign fibroadenoma in one part) and yet another part of the lump can be borderline or malignant phyllodes. So if you get a core biopsy and the results say it is benign and your surgeon won't remove it, you still need to keep checking for any change in growth as it could be the core biopsy sampled the 'good' part, as it were. I wish you lots of luck on Monday. Regardless what happens, there is heaps of support for you. If you feel able or want to, I'd love to know how you get on. I'll be with you in spirit, holding your hand!!!

Reply
  • Hello, I could only feel my first one as the second one was at my chest wall and only found from imaging. The one I felt was smallish (grape size), hardish, and immobile. However, please remember this - my GP who is excellent said that she never thinks about what a breast lump could be as sometimes she has thought the feel of a lump a was definitely typical of cancer and it turned out benign - sometimes the reverse happens, too. So, the reality is that you will not know until you go through the assessment process at the breast clinic. I know the wait is horrible but many lumps do turn out benign (and there can be several types of benign lumps). One word of caution: phyllodes can present as being benign in one part (it can even present as a benign fibroadenoma in one part) and yet another part of the lump can be borderline or malignant phyllodes. So if you get a core biopsy and the results say it is benign and your surgeon won't remove it, you still need to keep checking for any change in growth as it could be the core biopsy sampled the 'good' part, as it were. I wish you lots of luck on Monday. Regardless what happens, there is heaps of support for you. If you feel able or want to, I'd love to know how you get on. I'll be with you in spirit, holding your hand!!!

Children
  • Hey [@opus]‍ 

    Thanks for describing yours!  My GP didnt say much and looked quite concerned :(

    But you are right, you don't know until you go for the scans/biopsies.  I have already diagnosed myself but I think that's because I don't want to be blind sighted and shocked when it's bad news. 

    thanks so much for your well wishes, it's making me cry, emotional wreck ha!  Will update you on Monday (if I'm not too hysterical)x