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Laurie’s Fight Like a Girl Story (Phyllodes Tumor)

Laurie's Story Phyllodes TumorIn February of this year, I found a small lump in my left breast. I was seen by my OB, who sent me for a mammogram. On March 11th, I was told I had a Phyllodes tumor, which is very rare. I then had a biopsy and was scheduled for a partial mastectomy on the 26th of this month. I had the surgery and am still recovering at this time. My pathology report came back saying it is benign, but because my surgeon was unable to take wide margins around the tumor, there is a higher rate of reoccurence and it being malignant at that time.

Phyllodes tumors (PT) grow very quickly and are aggresive. Because they are so rare, there is not a lot of information out there on them or what causes them. I have found support groups online on Facebook, and that is a great comfort and support. I plan to continue to fight this and hopefully kick its Phyllodes a## out of my body, never to return.

I just mainly wanted others to know there are other people out here with PT, and you are not alone! None of us fighting whatever it may be that we have are alone, and we all are fighters and will overcome!

Laurie
Michigan
Submitted 03/31/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

4 comments

  1. Hi Laurie,
    It was really good to find your blog! I found my phyllodes (benign) tumor in September last year but didn’t get surgery date till January. They also thought it was a fibroadenoma so surgeon did not take wide margins. My surgery was a nightmare – I had emergency surgery the same day due to internal bleeding and developed a huge hematoma after. Had another surgery end of march. I rediscovered a small lump 2 weeks ago in the same breast at the surgery site:( so seeing my surgical oncologist next week. I too will keep fighting this struggle!

    Thank you for your encouragement – it is greatly appreciated!
    Blessings,
    Michelle

  2. Thanks so much for sharing your story! I was diagnosed with a PT in June of last year. I previously had 3 fibroadenomas removed in 2011, 2013 and 2014. Initially my PT was thought to be benign, and was 7x9cm. I had a full left mastectomy in January of this year, and my final pathology report unfortunately showed the PT at 13 cm and malignant. Now I’m facing difficult journey, with chemo and radiation to come. Your encouragement is definitely needed, especially for someone facing such a rare and aggressive tumor.

  3. So glad I found your site. My biopsy came back as possibly a fibroadenoma or phyllodes tumor. A fibroadenoma doesn’t make much sense – I’m 47 and on estrogen for a hysterectomy at 32. And the edges are jagged. My surgeon wants to do a wide excision I guess lumpectomy. I only talked to her on the phone but I got my path report, which suggested PT. Since my doc is out of town next week I see her on 8/1 and she said we’d have to take the whole thing out, with good margins, to ensure what it is and if it’s benign. I’ve read they can metastasize even if benign but there’s not much information out there. I wonder what happens after surgery? Can it come back? What’s the recovery? What will my breast look like? Does chemotherapy work if malignant? I’m nervous and have a lot of questions…

  4. Hi there, Im 37 mother of 2.. I was diagnosed with a phyllodes tumor this past February. They said to come back in 6 months for follow up. I went in today and was told it has grown but they said it is “stable” the radiologist said for me to return in another 6 months. I’m confused though as my breast surgeon said if it grows at all that she wants me to have removed.. however mine is attached to my chest wall.. so it will be invasive.. scared and unsure what to think.. but, thank you for sharing your story.. I had never heard of this type of tumor before and I do find comfort knowing I’m not alone.

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