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Phyllodes Tumor…anyone else?

elamom Member Posts: 37
edited October 2022 in Benign Breast Conditions

I have a long thread in the not diagnosed forum about my tests and biopsy that led me to this point.

I'm having surgery Friday to remove a likely phyllodes tumor. The dr said the pathology couldn't rule out a benign or low grade phyllodes tumor, and then when she checked it, it has grown quite a bit since my biopsy 9 days ago.

Because of the growth she's pretty confident it's a Phyllodes tumor and wants to get it out asap. I'm glad she was able to schedule the surgery for just two days after seeing her!

I know these are rare…just looking for anyone else who may have been through this and willing to share their experience. Thanks!


  • minustwo
    minustwo Member Posts: 12,990

    HOpe the rest of the tests show B-9. Good luck with the surgery.

  • i just underwent an excisional biopsy (lumpectomy) for a very large mass in my left breast that seemed to appear out of nowhere last year. i'm really beating up on myself for not getting it checked asap. i'd never heard of phyllodes tumors, i did self-exams and saw my gyno regularly, hadn't yet had a mammogram but was working up to that. i'm grieving my partner's suicide less than two weeks before lockdown, still, and pretty isolated in the city where i moved at his urging, and pretty relentlessly shell-shocked and so when i felt this mass the size of a tangerine, i just decided that it was probably fine because it had to be because i didn't understand breast cancer to "behave" in this way, and i also couldn't take another thing. or felt that i couldn't. in any case, the mass didn't go away but seemed to be constantly in flux, changing size, location. sometimes feeling ropey, sometimes round, sometimes diffuse, sometimes localized.... i realized i was months overdue to see my gyno for a pap smear and i'd have to deal with that but hoped if i went at a time the thing was feeling smaller/flatter/"better," she'd overlook it and i'd be able to go on ignoring it and trying to find joy and meaning and to cry less and sleep through the night and finish my thesis, finally.... but no, she found it, then came the diagnostic mammogram, then the ultrasound, then the call that the results were inconclusive, then an appointment for a biopsy, then a week of waiting, then a call from the surgeon who'd performed the biopsy saying that it wasn't "a breast cancer" but that it could be a phyllodes tumor and therefore (possibly) cancer in my breast. i've completely blown the "don't google" protocol that i'd set for myself and i'm afraid of my own phone and have no idea how to prepare for what could be at least three or four different scenarios ranging from fibroadenoma (seems extremely unlikely at this point) to benign phyllodes or borderline or malignant and maybe even, from the looks of what i'm reading.... just very bad news. i don't want to harrass my surgeon and call and call and ask the same unanswerable questions but it really scares me that so little seems to be understood about phyllodes and that it IS so rare. i'm fine with the surgery that already happened because my left breast was much fuller than my right and now they seem even, but im already thinking "mastectomy," and "radiation's effects on reconstruction" and am pretty terrified. the different tests and waiting periods started i think five weeks ago and i'm strong about bouncing back from horrible things that i can at least temporarily slam the door on but this is my body and the prospect of being afraid of what's going on inside it and what's going to be done to it and being alone with all of this vague and contradictory and sometimes ominous informations.... yes it is also lonely. scary and lonely. i still feel like i need to prepare for whatever phone call is coming my way but i have no idea how to do that and part of me just wants to block the surgeon's number and ignore all of this again. but i cant. 

  • that was a lot more self-revealing than it needed to be but i feel like i cant talk to anyone and that aside from just feeling overwhelmed and wanting to shut it all out, i sound nuts because this is relatively uncharted medical territory and i sound insane even when i'm keeping it brief, i worry. or like i'm self-diagnosing or like i want attention so i'm dragging this out as long as possible. i am hoping to hear from others who are further down the road with this, even just a little. i don't know enough to ask a smart question. i just want to hear from other people who are navigating this. because it is real and i'm starting to realize that the doomsday literature coming up on google scholar (i'm not showing off, it's just that i can't find anything non-academic intended for patients) is not intended for patient education. 

  • just to be clear, i'm in the same boat that you're in i realize, but it really is quite the mindf***, this diagnosstic fog that is phyllodes. my experience of it which may be high grade for all i know is that i have no idea what i am really dealing with but feel like if i don't stay terrified, which i wasn't when this all started, or at least i was suppressing it, then i'll get blindsided harder than ever by that phone call i could get at any minute. my tumor was pretty damn big, i'd recently recovered from pre-vaccine covid when i first noticed it and had been lying down mostly for about a month and not showering regularly and felt like this big knot just burst forth.... and it definitely felt like a brand new problem, but my surgeon suggested that another explanation could be that it's been with me for years which is why my left boob was always bigger (but not disturbingly so, i didn't think until all of this started up), and that i'd just never felt it before because i'd had younger, bouncier breast tissue kind of masking it. "it" being, i don't know, a phyllodes or a cellular fibroadenoma which i think is the same thing? lost.

  • elamom
    elamom Member Posts: 37


    So sorry for what you're going through! It's so hard. I am not normally an anxious person and I had really bad anxiety when I was going through this and surgery earlier this year.

    There is a really good Facebook group (Phyllodes Support Group) with a lot of information and research. The members in that group have a lot of wisdom about these tumors.

    Hang in there