Phyllodes tumor - what?

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eviec1
eviec1 Member Posts: 140
edited July 2021 in Benign Breast Conditions

Just wondering if anyone has thoughts about this. I was just taking a look through my visit summaries on my patient portal and saw one from my first radiation session last week (I am currently doing radiation for IDC). The notes include this:


Patient Characteristics:

Postoperative without Neoadjuvant Therapy (Pathologic Staging), Invasive Disease, Breast Conserving Surgery, Node Negative/Unknown, Whole Breast Irradiation

Current Disease Status: Postoperative without Neoadjuvant Therapy (Pathologic Staging)

Phyllodes Tumor: true


Phyllodes tumor? No one has ever mentioned this to me. Should I be concerned about this? A quick Google search says that this is usually benign, but just weird that it was never even mentioned.

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2021

    Hi eviec1,

    Here are a couple of helpful links from the main Breastcancer.org site you may find useful:

    We hope this helps!

    --The Mods

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  • eviec1
    eviec1 Member Posts: 140
    edited July 2021

    Thanks for those links! Hopefully it is benign!

    It's just very confusing because no one ever mentioned it to me at all and I just had a mammogram (between lumpectomy and the start of radiation) a week prior which showed no suspicious masses. They did a CT scan prior to radiation and I never saw the results, but they told me that was just for planning purposes (not diagnostic purposes) and then they took x-rays at my first radiation appointment, which is where these notes are from. So I guess they saw it on the x-ray? And no one told me? And it didn't appear on the mammogram just one week before? How is that possible? I did read that they can be fast growing. I just wish someone would have mentioned it to me - or that I had noticed this in my notes during the week when I could have called and asked about it. Now another weekend of worry...

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2021

    Yes -- we agree! We're not sure why no one would have gone over every piece of your report with you and explained any significance/need for further testing. Definitely make sure you call your doctor on Monday and get more information!

    Please keep us posted! Hoping this is benign as well!

    --The Mods

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited July 2021

    Hi eviec! That is disturbing. I would add maddening b/c I've been in your shoes before though not regarding breast cancer. I would encourage you to message your onc just to let them know you saw this on x-ray results. Ask if they have any concerns about it and any other questions you have. I've often seen on this site where people have these removed though I'm not sure if that "needs to" happen 100% of the time. I'm also certain it is not the priority for you right now which MAY be why they didn't bring it up? I'm also surprised b/c with all my health issues breast cancer providers seem the only ones who are really really really transparent with patients.... I've commented on that to providers in other specialties - how much I appreciate that and wish other medical fields operated similarly.... I think that offers ones truly good care when patients and medical providers communicate collaboratively with full or near full disclosure of issues/findings. Otherwise they are, even if by default, making decisions for us....

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  • Momof2G
    Momof2G Member Posts: 11
    edited July 2021

    My first cancer was a rare cystocarcoma phyllodes tumor. It has a 1% chance of being malignant. Even if benign my Doc said it would have to be removed because it would grow and could overtake the breast. I find it odd that they never mentioned it to you.

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  • eviec1
    eviec1 Member Posts: 140
    edited July 2021

    Yeah, I have messages into both my oncologist and nurse navigator. From the Google searching I did last night, my understanding is that they do need to be surgically removed. So I'm not sure if I should even continue radiation at this point because if I have another tumor in the same breast, I think I'd rather just go for the mastectomy this time and be done with it. So why am I doing radiation? That's part of what's frustrating about not being told - it's like they aren't offering me any decisions in my own care when it seems like there would be important decisions like this to make.

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