Phyllodes - surgery

Mlwkq2
Mlwkq2 Member Posts: 2
edited December 2018 in Benign Breast Conditions

Hi, Im 35 years old and new here. I had a 1.6 cm mass in my right breast discovered during a screening mammogram. (Never felt it). Long story short I had another diagnostic mammogram, ultrasound, then core needle biopsy. I just found out I have a phyllodes tumor. I am SO happy it is benign but was told I need it taken out. Meeting with a breast surgeon soon. I am, however, SO nervous to ha e it taken out. I asked the nurse if it would leave my breast deformed and she didn't think so. Anyone have any experience getting these taken out or have info on what it'll be like? Will I likely get a local anesthetic? How much time to heal? Would taking out 1.6 cm mass in my chest leave me deformed? Thank you in advance for anyone who take the time to reply!!!

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  • Hind
    Hind Member Posts: 1
    edited September 2018

    Hi Mlwkq2

    I removed the same type of tumors two years ago when i am 34 y .I thought that most surgeons would prefer to have an excision and take a margin of 1 to 2 cm from all sides. Since your tumor size is small, it may not affect the shape of the breast . The healing process passing through 3 stages : swollen, shrinking and fibrous tissues fill the area . It will take about 6 months to see how it will look. Now after 2 years i have a small dimple to remember me ..


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  • nashymc
    nashymc Member Posts: 4
    edited September 2018

    Hi Mlwkq2,

    I didn’t have a phyllodes rumour removed but I did have three fibroadenomas removed from the same area of my breast - one was 5cm and the other was 3cm, so two of them were pretty big! Having recovered from surgery I can say that apart from the scar, you wouldn’t know I had surgery. My breast looks exactly the same as before!

    With regards to the actual surgery, I imagine you’re more likely to have general anaesthetic as that’s what I had and I think that’s common practice for lump excisions. And healing time, for me anyway, was about 2-3 weeks - the whole process wasn’t as bad as I thought it would be

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  • Starrkd
    Starrkd Member Posts: 2
    edited November 2018

    Hi there! I had a lump in my breast for nearly 2 years before I decided it was time to find out what it was, as my GP just said it doesn't look like anything and since I'd recently had a normal mammogram, just keep an eye on it. So at my next mammogram I told them I had this lump for almost 2 years. Mammogram, US, core biopsy, surgical excisional biopsy, pathology was sent from local lab to U of M for confirmation diagnosis of borderline phyllodes tumor, 2.1 cm, grade 2. No idea what that means. But when you hear that these tumors grow quickly, they're not kidding!! I had the excisional biopsy on November 2nd, today is November 24th and it has grown back even larger than before. I'm scheduled for a lumpectomy on December 3rd. I am blown away by the rate of growth. My surgeon did not get clear margins according to the pathology report. Phyllodes tumors grow very quickly. I haven't had a chance to have genetic tests done. I don't even understand what borderline phyllodes tumor means. I'm sorry I'm of no help to you. Because I am lost myself. Before my lumpectomy I'm taking a list of questions with me.i see women on here saying HER- And different things I've never heard of. I don't think there have been tests like that done. I guess I just needed to vent my frustration with this small town medical team. I've learned more on this board than in my real life! Thanks for letting me in.

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  • sparrowhawk
    sparrowhawk Member Posts: 179
    edited November 2018

    Hi. I had a 5cm benign phyllodes tumour removed on 8th November. I had general anaesthetic. It was quite painful a few days afterwards, and I still do get pain and have numbness in my breast, likely from fluid naturally accumulating. But I'm doing very well, really! It's actually a relief for me to connect with other women with phyllodes. All my surgeon really told me is that it's rare, it's aggressive, and it can grow back - mine perhaps more likely as she took quite small margins. I wish you the very best!

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  • Starrkd
    Starrkd Member Posts: 2
    edited November 2018

    That is what the surgeon told me! I see women posting things about their tumors I've never heard of. I just wonder why I wasn't told more, especially since it's borderline phyllodes grade 2. Which actually doesn't mean anything to me either. If your surgeon got clear borders, and your pathology report came back benign, then from what I've read on here, you should be all done with treatment. I pray you are. I'm so happy that things have gone so well for you. So many young women facing something so scary. I'm proud to be part of this group of strong, kind women. Keep us updated please!!

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  • sparrowhawk
    sparrowhawk Member Posts: 179
    edited December 2018

    Starrkd, even though mine was benign I wish I had been told more. I had to read a lot on my own and that was really hard in itself. Perhaps it is simply just that many don't know much about them. My surgical margins were 5mm at most - maybe because the surgeon thought it was a fibroadenoma, and because it was close to the skin. I'm trying to stay realistic that it could well come back --- at the same time, maybe it won't! I really hope for all of us that it is the end.

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