Anyone diagnosed with Phyllodes tumor?

@lo2026, here's a blog post that the Mayo Cancer Education team wrote that may interest you:
- Genetic Testing for Cancer: 9 Common Questions about Genetic Testing https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/genetic-testing-for-cancer-nine-common-questions-about-genetic-testing/

I might suggest talking with a genetic counsellor. Talking with the genetic counsellor can help answer your questions and help you to decide whether or not you would benefit from getting tested.

Has genetic testing been recommended for you?

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.

@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!

@johnsoncs1

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

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.

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.

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.

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.

@juliedawn613
Here is the name of the group I referenced:
https://cancerhopenetwork.org/
The support and information about the experiences from other people might be helpful.
Again, I'm praying for you for the best!
@yellowdoggirl

Hello Juliedawn613,
My 33 yr old's daughter had a phyllodes tumor in her breast in 2023. Her midwife found it at 2 cm, in a few weeks. It had grown to 7 cm. When found she was told it was benign, but no biopsy had been done so they didn't really know.

This kind of tumor is more like a sarcoma than it is like. A "Regular" breast cancer. Everything I know about them I learned from my daughter as she was going through this. It was malignant so she had a mastectomy with reconstruction after that. She chose not to have radiation.
No she has a scan every 6 months to make sure it did not recur or a new one start elsewhere. It is true that most of them are benign and even her doctor was surprised.
She read a lot online, sticking to reputable papers. It seems the Italians have done a lot of research on phyllodes. It is scary, I understand! You are not alone. There's a good organization that connects people with cancer with other people who have a same kind of cancer and in about the same age group so you have things in common. It is a telephone-based community and encompasses the whole country so there is a good chance you will find someone like yourself. I will look up the name and put it in another message if I can't get back to you.
It is very hard to be hit with a rare disease about which not that much is known. If you can get to an academic teaching hospital, a big one, I think you will be able to find out more. Keep asking questions until you get your answers and don't give up!
I am wishing you the best and will look up the name of that group right now.