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Anyone diagnosed with Phyllodes tumor?

Posted by johnsoncs1 @johnsoncs1, Feb 25, 2021

Looking to start a discussion for anyone that has been diagnosed with Phyllodes tumor in breast or prostate.

Interested in more discussions like this? Go to the Cancer Support Group.

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Colleen Young, Connect Director | @colleenyoung | Apr 20, 2025
In reply to @anitaditto1006 "I’ve had reoccurring phyllodes tumors in my breast. First occurrence was July of 23 I had..." + (show)
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I’ve had reoccurring phyllodes tumors in my breast. First occurrence was July of 23 I had a 8x3 cm removed with a second occurrence in Jan25. The biopsy I had in Dec. was a horrible experience. It was painful and it resulted in fluid leaking out and now I have developed one on the outside of my breast. I have changed doctors and my current doctor’s recommendation is to have a mastectomy. I’m just wondering if this has happened to anyone else? I can’t find a case online that has this recorded.

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Hi @anitaditto1006, welcome. I moved your post to this existing discussion about phyllodes tumors.
Read more here:
- Anyone diagnosed with Phyllodes tumor?https://connect.mayoclinic.org/discussion/phyllodes/

I did this so you can read previous posts and connect with fellow members like @johnsoncs1 @knutter1 @cheddar @sarapusc @michelle0509 @malyah @ash2021 @lislordav @yellowdoggirl1 @danielleruddy @ssinkey @marvinjjc @mariewurch and others who also have experience with this type of tumor.

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michelle0509 | @michelle0509 | Apr 21, 2025
In reply to @colleenyoung "Hi @anitaditto1006, welcome. I moved your post to this existing discussion about phyllodes tumors. Read more..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @anitaditto1006, welcome. I moved your post to this existing discussion about phyllodes tumors.
Read more here:
- Anyone diagnosed with Phyllodes tumor?https://connect.mayoclinic.org/discussion/phyllodes/

I did this so you can read previous posts and connect with fellow members like @johnsoncs1 @knutter1 @cheddar @sarapusc @michelle0509 @malyah @ash2021 @lislordav @yellowdoggirl1 @danielleruddy @ssinkey @marvinjjc @mariewurch and others who also have experience with this type of tumor.

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Yes, My first was 2020 and was removed by Lumpectomy came back as Borderline. My second reoccurrence was in the 2022 and was malignant- did a double mastectomy with .7 margins, no treatment needed. I had my 3rd occurrence in January, had a lumpectomy in February, malignant, currently doing radiation and will do chemo next month. Good news it has not metastasized. Currently being treated at U of M. My situation is a rare case most do not return.

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anitaditto1006 | @anitaditto1006 | Apr 22, 2025
In reply to @colleenyoung "Hi @johnsoncs1 and welcome to Mayo Clinic Connect. I have added this discussion thread to the..." + (show)
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Hi @johnsoncs1 and welcome to Mayo Clinic Connect. I have added this discussion thread to the Breast Cancer and Prostate Cancer groups as well as the main Cancer group. As you know A phyllodes tumor is rare, so all the more reason to start this discussion group to help connect people with this rare tumor type. Thank you.

To get the conversation started, why don't you share a bit more about you? I know very little, but I do know that phyllodes tumors can be hard to diagnose. Was that your experience? What treatments did you have? Was the tumor found to be benign or cancerous?

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They are definitely hard to diagnose, especially the one on the outside. I had 4 doctors visually look at it before I got a biopsy on it. My margins have been borderline on the past two surgeries. I have consulted with a doctor and I am scheduled with a plastic surgeon so I can do mastectomy and reconstructive surgery all at once.

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diadax78 | @diadax78 | Dec 17, 2025
In reply to @johnsoncs1 "Anybody else out there with current or previous diagnosis of any type of Phyllodes tumor?" + (show)
Profile picture for johnsoncs1 @johnsoncs1

Anybody else out there with current or previous diagnosis of any type of Phyllodes tumor?

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@johnsoncs1

Yes. I had a large phyllodes tumor removed three years ago, and may have a recurrence. Hoping for the best, but scared.

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yellowdoggirl1 | @yellowdoggirl1 | Dec 29, 2025

@diadax78
Hoping for the best for you! Doing the same for my daughter who, a bit over 2 years in is ok.
Changes to the Affordable Care Act have been a big worry for everyone. And more worry is NOT what any of us needs!
Good luck, thinking good thoughts for you!

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lo2026 | @lo2026 | 6 days ago

Hello all! I’m a 53 year old female and a 2.5 cm phyllode tumor (left breast) was found early April 2026. My previous mammogram in July 2025 did not show this tumor. I had a biopsy completed and was told it to be benign. I am scheduled for a surgical consultation in June 2026. I’m feeling anxious and hoping it hasn’t grown more since April. Thank you all for sharing your experiences. My mother was diagnosed with breast cancer in her late 60’s and remains in remission for the past 8 years. She did a genetic testing and it came back negative. I have a 25 year old daughter and I wonder if this is genetic. Should I get a genetic test? Is my daughter likely to have a phyllode tumor developed? Thank you.

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